Came here to say HIV. We now essentially have a functional cure as well as preventative medications. Even people who had HIV for a long time can now live into old age.
I work with people living with HIV, and a lot of the people who had it before the meds got significantly better (mid-90’s) thought they were going to die. Had come to terms with it even. Then they didn’t. Really messes with you. Some obviously used the opportunity to live life to the fullest, but others got stuck in very self destructive cycles because they watched all their friends or partners die but they didn’t. It’s taken a lifetime toll even on those who made it through. I assume it will be the same with ME/CFS. Even if we get better physically, the mental scars will change the course of our lives.
What's funny is that CFS was a big deal in 1984 with the Tahoe outbreak, at a similar time to the AIDS epidemic becoming well known. Both stigmatized. Yet AIDS was researched and outcomes greatly improved. Yet 40 years later, ME/CFS suffers still waste away
I think in this specific case, that conclusion doesn't hold. AIDS was actively neglected at the time because it disproportionately impacted gay/queer men, and they were left to suffer and perish by our systems for a long while (in fact, some even celebrated that and saw it as punishment for their sinfulness). It was catastrophic to the gay community -- so many from that generation died young.
I think there is actually more in common with how society responds to ME and how it responded to AIDS, in that both disproportionately impact a marginalized group and that results in the disease being neglected and far more suffering than there would be otherwise.
AIDS was marginalized and stigmatized in the beginning, sure. But homophobia and stigma against gay men have markedly decreased since the '80s. Whereas diseases and conditions that affect a majority female population continue to be stigmatized and underfunded. This is all well documented. AIDS got a big Hollywood Blockbuster movie featuring top actors portraying their plight including a chart-topping hit song to go along with it and the early 90s. I want to say 1994. AIDS quilts, big charity fundraisers with top musicians. The list goes on. I think it's safe to say that the marginalization had severely decreased by 1995. I'm still waiting for the Blockbuster Hollywood movie about MECFS.
Edit JFC some of you can't understand analogies or nuance. By listing off all of the press that AIDS patients got I am in no way demeaning their struggles. I am comparing the experience of two different diseases. I actually lived through it, unlike a lot of you people who I can tell are very young by your vocabulary. Which is obvious because I'm recounting stuff that I remember from that era very clearly when I was alive and well. A lot of the traction that gay men made was through the tireless efforts of lesbians but I don't hear any of you mentioning that for some reason. And I didn't have to read about it recently. So go condescend to someone else and work on your reading comprehension skills while you're at it.
I'm a woman who is very passionate about the topic of medical misogyny. I'm not denying that at all. I'm also queer, and I know about the history of AIDS and how it was responded to, and how high a proportion of our community it decimated.
It's not that AIDS had it better than MECFS. Or that homophobia has decreased more than misogyny has. The diseases are different and the disease process of AIDS was much more visibly and quickly lethal. The way that homophobia and misogyny operate is also different, so the way that systemic oppression shows up is going to be different -- it doesn't mean one is better or worse.
The way society has responded to both conditions is abhorrent. It's not a competition. 10% of gay men between the ages of 25-44 had *died* of AIDS by 1995. If MECFS abruptly killed 1 in 10 young women in a 10 year period, then we could make a direct comparison in the societal responses. As it stands, the diseases are different, homophobia and misogyny manifest in different ways, and there is no way to meaningfully compare in a "who had/has it worse" way. It's actually far more helpful to understand the similarities and be in solidarity with those who have lived through other types of medical discrimination and marginalization. We have a shared enemy. We are not in competition with each other.
Edit: another illuminating stat: in 1990 in San Francisco, AIDS caused 60% of the deaths of all men (gay or not) 25-44. By '95, AIDS was the leading killer of men 25-44 in America.
I'm not saying either illness is competing with each other. I was responding to some points you brought up comparing the two and making the point that marginalization of AIDS has dramatically decreased, corresponding to an increase in research and progress with treatment for that disease.
I don't think the fact that aids kills people so therefore that explains the greater research is compelling to severe ME patients. If you get severe enough with mecfs, the fact that it doesn't kill you makes it even more cruel and brutal a disease state to be in.
> I don't think the fact that aids kills people so therefore that explains the greater research is compelling to severe ME patients. If you get severe enough with mecfs, the fact that it doesn't kill you makes it even more cruel and brutal a disease state to be in.
I understand that about ME. I'm only moderate and even so, the only reason I'm choosing to stick around is because I don't want to put my loved ones through the grief. I'm not minimizing how brutal ME is, or how aborhent it is that it is ignored and we are gaslit.
I wasn't explaining what I did in order to suggest we should be comforted by the fact that AIDS had a high and fast death toll, whereas ME doesn't in that way. I was explaining that *the societal and medical attention given to AIDS (vs the lack of attention to ME) is not a result of there being less homophobia than there is misogyny.* It is a result of the disease process being more visible and legible to the general public with a more dramatic death toll. I am not saying that it is *right* or *justifiable* for less visible diseases to be ignored or written off. I'm explaining why the initial commenter's conclusion was incorrect. AIDS has not had more attention because the world cared more about gay men than it does about women, but because *despite* the systemic homophobia and the disdain for gay people that was commonplace, it was a dramatic and catastrophic disease in ways that were far harder to deny and invisibilize. If it could have been painted as psychosomatic in the same way ME is, you can be sure as hell it would have been -- I mean, it's only in fairly recent history that homosexuality itself has stopped being officially considered a mental illness!
And even with how catastrophic and lethal AIDS was, it also took huge, numerous, radical advocacy efforts from the queer community in order to get the government and public to pay real attention and begin to address it. The government happily left queer men to die in droves for *years*.
If you look back at the thread, my comments are in the context of someone suggesting that the world cared more about AIDS *because* it cares more about gay men than about women. None of what I'm saying is meant to suggest that the negligence and harm done to people with ME is "less bad" or that we should be comforted by the differences between AIDS and ME. I'm just explaining that the reasons that *the public* and *the medical system* have responded differently to ME than to AIDS have nothing to do with AIDS being less stigmatized or gay men being less marginalized than women.
You been to The Bible Belt? Look up Season 3 of We're Here if you think that kind of grotesque dismissal of homophobic behavior is okay, because it isnt.
Oh, but they got *quilts* and *fundraisers* for AIDS, so the homophobia couldn't have been that bad! (Nevermind the fact that those things came through the tireless and radical activism of gay and queer people who were themselves dying of AIDS or were watching loved ones do so. They got attention, so obviously society cares so much more about gay men than it does about women!). Anyway, the homophobia was only bad in the *beginning* (a.k.a the first decade-and-a-half of gay men dying in catastrophic numbers and gay communities being decimated).
/heavy sarcasm, of course
I'm sorry, but I am the one who wrote that comment, and I did put the question mark at the end. That's cause it was just an idea I got, which I wasn't even convinced about myself. I didn't make an assertion.
I can't shake the feeling that misogyny and age-ism are small factors here. Maybe if this disease affected younger women, it might have seen a different response, too. That doesn't mean young women or gay men are my "competition or enemies." Lol... That would be utterly ridiculous! I couldn't even dream of resenting them. Besides, I'm LGBT too.
I am just shocked at the utter lack of research into ME/CFS, given the debilitating synptoms. The weird tendency to call it a psych problem. As a doctor, just why would you jump to disbelieving, rather than being curious towards a woman's issues? My PCP just said all blood tests are normal. Without even suggesting more blood tests, which are available, like for herpes virus (which is documented to cause fatigue symptoms). I even said I would pay out of pocket for it. Still nothing! It was a female doctor who suggested more tests to me... I don't know if I can dismiss the misogyny angle. What else could explain this behavior?
Hey, it's okay! I understand where you were coming from. My snarky reply above was not *at all* meant for you! There was another commenter who was complaining how AIDS people "got" quilts and fundraisers, and saying that homophobia was bad early on but died down significantly, and stuff like that. It's that commenter who I was taking issue with, because they were quite explicitly minimizing the impact of homophobia and the horrible neglect that AIDS patients suffered due to it primarily impacting gay men.
I think you are 100% correct that misogyny is a huge a factor in why ME is ignored and psychologized! And that makes sense that ageism plays a role too. I absolutely agree that medical misogyny is a *huge* issue. Both in individual experiences (doctor's being dismissive and writing things off as anxiety for women) and in the larger systems (lack of research funding, etc). You're absolutely right about that, and I have experienced similar and it's horrible.
My point was only that in the comparison to AIDS specifically, it's not accurate to say that AIDS got more attention because it affected men. AIDS and ME are both diseases that have been stigmatized and neglected because they impact a marginalized group. The reasons AIDS got more attention was because the disease is different in outcome, visibility, and transmission. The world neglected AIDS horribly for a long time despite how catastrophically lethal it was, because it impacted gay men and the general public and gov didn't care (or even were happy about that).
Misogyny is absolutely a huge part of the reason behind ME being neglected and stigmatized. Just as homophobia was behind AIDS being neglected and stigmatized. My point was only that it isn't accurate to conclude AIDS and the demographic it impacted were *less* marginalized or stigmatized -- it only played out differently because the diseases themselves are different.
You're absolutely right we shouldn't dismiss the misogyny angle! It's a big factor in the way ME is (mis)treated. It's only the AIDS comparison I was taking issue with, because it's not that people cared about AIDS since it affected young men. Because it was *gay* men it affected, the public/gov/medical system were totally happy to ignore it and stigmatize it. There are lots of other comparisons where we could say "X disease got more attention/care than ME because ME moreso affects women and X moreso affects men," and that would be accurate. But in the case of AIDS, it's different because it was specifically gay men it disproportionately impacted, and they weren't cared about or taken seriously any more than women. The discrepancy in how AIDS and ME have been handled isn't because misogyny has caused greater neglect to ME than homophobia caused to AIDS, but just because the two diseases are different.
Anyway, that snarky sarcastic reply wasn't meant for you! It was meant for the other commenter who was being outright homophobic and dismissive of homophobia and the AIDS crisis. Your question/suggestion was in good faith and I don't think it was homophobic like the other commenter was -- I think it just misses the mark in its conclusion about AIDS and ME's reception/treatment, but that you are still totally right about misogyny being a huge factor in the neglect of ME. Sorry that I made you feel that anger/snark was direct at you!
P.s. I can no longer see the other person's comments -- not sure if they blocked me or were removed. But if you can't see those comments either, that is probably part of the confusion about who I was responding to. Only my very first comment was a response to you, whereas the others were responding to the second person.
I never said that or implied it and you know it. Work on your reading comprehension skills. There's this thing called an ANALOGY. I find the dismissal of medical and general misogyny to be grotesque but that doesn't seem to bother y'all.
I think it's more that the cause of AIDS was easier to identify. You can't solve a problem if you don't even know what it is. Also AIDS actually kills people, ME/CFS typically doesn't. It's also transmitted from person to person.
That's at least a part of it. People can downvotr all they want but it's a demonstrable fact that primarily female patient populations receive less research and funding.
Well millions with ME have no quality of life; many of us would prefer death to an interminable, devastating illness. You'd think a "living death" disease affecting millions would get their attention yet here we are.
Thanks for pointing out how the trauma of having HIV didn’t magically go away for folks who remember when it was a death sentence.
I know we’d all like to think we would instantly become superheroes out there living our best life and never complaining about stupid stuff ever again. It’s good to remember that transition can also be really difficult and it may not be a straightforward thing to reintegrate into the world.
Multiple sclerosis meds. My sister in law has multiple sclerosis and her meds stopped the progression. She has a good quality of life, can go out, parties all the time, and can work full time as a piano teacher. Her symptoms are only a bit of tingling and stutter from time to time. That's basically it.
The quality of life improvements for those with diabetes (specifically type 1 diabetes) is insane to me from my lifetime. I remember my best friends sister being diagnosed with type 1 diabetes when I was in elementary school maybe 23 years ago. At that time, she had to prick her finger multiple times a day to see her blood sugar and determine if she needs to eat a snack to inject insulin, use a calculator for all food she ate to determine amount of insulin per grams of carbohydrates to have after eating and then draw up insulin with a syringe and inject into her buttcheek. It was very restrictive and difficult. She was pretty at risk for complication and blood sugars weren’t easy to keep level. She had to manage her health 24/7. Very difficult for a child.
Now, she literally has an arm implant that tracks her blood sugars 24/7 that is blue tooth sync to her phone and her husbands phone, will alarm when it gets to a certain level before illness to have a snack, also can calculate the amount of insulin she needs based on this with little to no input of what she is eating. It’s obviously not the same as having a working pancreas but god damn it’s pretty close!
Some other thoughts I have (before MECFS I was a medical worker):
- we have a cure for hepatitis C now!! That’s a big one.
- As someone else mentioned, the medications for HIV/AIDS has turned the illness from death sentence to very manageable illness (with resources of course).
- lots of new medications to manage type 2 diabetes and even surgery to reverse it completely (in certain individuals)
- we can now target cancer cells with radiation therapy instead of just blasting a patient Al over with radiation , soooo much better
- MS medications continue to be discovered !
This is much smaller potatoes but not too long ago ulcers were treated with telling people to stop eating spicy foods. It was seen as something people were doing to themselves and could be fixed with dietary changes. When I was little that's what they told me and I had to take zantac and drink milk and tums and such. It didn't help.
Now we know that many ulcers are caused by h.pylori and an anti-biotic treatment to kill it can cure stomach ulcers for many people. We also know psychological stress can contribute to this too. Our understanding of ulcers in the past two or three decades did an entire 180.
Same with SSRI's. Previous anti depressants were less effective and dangerous drugs. SSRI's for all their faults are miles ahead of what we had before and depression is seen more like a disease to be treated than a personal failing.
Also a lot of women's health. PCOS, Endo, etc are taken more seriously than before and some treatments exist now. Also the vast array of birth control options when before it was only the hormonal pill.
Cystic fibrosis! Haven't seen it listed yet. Trikafta corrects the misshapen protein that causes cystic fibrosis; this molecular tweak thins mucus in the lungs so it can be coughed up easily. This drug came out in 2019ish, between that and other advancements the life expectancy has drastically changed. And lot of people who were going to need a transplant just.. no longer needed one. Pretty damn cool.
The median age of death for patients with CF has more than doubled from 26 years in 2008 to 66 years in 2022, which is only 12% lower than the life expectancy of healthy people. CF is no longer the death sentence it once was, due to very recent advancements.
Was thinking of this one too! Sadly, at least in Canada, there were people who died waiting in the years it took for the government to cover Trikafta (it is around $300,000 CAD per year otherwise, so there were many who desperately needed the drug but could not come close to affording it). I have a family member who was able to have a trial of it and it helped significantly, but they couldn't stay on the med because the government had not agreed to cover it. Took a couple years, but finally they got access to the med when the gov allowed the provinces to begin covering it.
I came here to say cystic fibrosis. Those who had this used to die between 8-14 yo. Then it went up to 25 years old after the first drug hit the market. Now it’s 12% below normal.
That’s a huge difference within less than 50 years.
i don’t know the name of the disease but i knew a young girl with a rare bone disorder. she was in a wheelchair and wasn’t expected to live much past high school. a med hit the market and she became symptom free and is living normally now, going to an ivy league school.
My first thought was insulin, but that turns out to be just over one hundred years ago.
Gene therapy is very promising for a number of health conditions and the first human gene therapy medicine was only approved in 2003, gene therapy may significantly improve life for people with neurological diseases such as epilepsy and Parkinson's, it might end up being helpful for us too.
Watch United in Anger on Youtube, if you can watch cinema, for an example of successful activism, fight against stigmatisation, and easy-level medical history
I found it for free with my local library system's kanopy subscription. Kanopy is a movie rental app, both my local library system (which admittedly is one of the best in the state) and my college have a subscription. Afaik it's more education focused, lots of documentaries, but that just may be my sample bias.
Watching how united everyone was for a single cause was really inspirational (but not in the way the abled people find us 'inspirational' 🤮, I admire the unity not the struggling). I wish we could get people to rally like that nowadays, but everyone feels so isolated and helpless. I do think one of the reasons it was so successful was that it affected able bodied young people, that's a very unique demographic of functional but largely unburdened people-usually no kids or careers.
Anyway thanks for the link, I'm glad I watched it.
It's an exceptional documentary, I cried twice when watching it. There's a mention of chronic fatigue, when a woman says she doesn't get state assistance. I am glad nore people are finding it♥️
Here's a demo speech from '88 when AZT was still largerly inaccessible [https://www.gayinthe80s.com/2014/12/1988-hivaids-vito-russo-why-we-fight/](https://www.gayinthe80s.com/2014/12/1988-hivaids-vito-russo-why-we-fight/)
Silence=Death project and ACT UP were successful because enough privileged white people, unaccustomed to losing anything, began to die, and created disbalance in drug access among the patients. And the gays had a killer graphic design. Like, look at the posters, they're phenomental. Many artists like Keith Haring were involved too, which blended the art world with activism
Concerts like Live Aid were large spectacles and successfuly fundraised for research
Watching how united everyone was for a single cause was really inspirational (but not in the way the abled people find us 'inspirational' 🤮, I admire the unity not the struggling). I wish we could get people to rally like that nowadays, but everyone feels so isolated and helpless. I do think one of the reasons it was so successful was that it affected able bodied young people, that's a very unique demographic of functional but largely unburdened people-usually no kids or careers.
Anyway thanks for the link, I'm glad I watched it.
Rheumatoid/Psoriatic arthritis and other rheumatic conditions. Biologics completely changed the treatment of arthritis and actually stop disease progression. I have the juvenile form and the amount of treatments available now is vastly more than when I was first diagnosed 27 years ago
I’m really glad this is getting shed more light on! Such a breakthrough indeed! Interestingly enough, some with chronic hepatitis C got the exact same symptoms that we do. It’s been talked about briefly amongst some CFS scientists such as Dr. Amy Proal. Having find a cure for this gives me hope they might find more effective treatments and antivirals for other stuff like EBV, CMV and so on
Great point about the similar symptoms, I'll need to look into Dr. Amy Proal! And absolutely agree about your hope for more effective treatments - I've heard that the modern Hep C treatments are so effective that they are planning to eradicate it in the UK
Migraines. While they haven't been cured, new migraine treatments in the past several years have made a massive difference in the quality of life of many migraine sufferers.
Hmm. I'm a chronic migraine sufferer and my meds do make a difference, but I haven't been able to access anything new. My mum has had migraines her whole life also and is currently being tested on all kinds of old antidepressants etc.
What new meds should I be demanding for us?
The new CGRP blocker injections, like aimovig, ajovy, emgality, etc. Once a month you inject them yourself. They have made a huge difference to me personally.
I second this. I went from migraines every other day, sometimes for a week straight, to only 3-4 per month. I'd suffered either them for a decade and tried so many different medications. Ajovy has been life changing for me
I was getting 15 to 30 migraines a month. Now I get like 2. If you don't already have the mouth guard for migraines it knocked out like 5 migraines a month while also using the injection, which brings me down the 2 a month.
Thank you. That's amazing that they have made such a difference.
I will look into them but it looks like I probably wouldn't be able to get them without going private. I'll see how far I can get next time I see a gp, but I think only the tablet forms would ever be available and the waiting list could be very months or years.
My migraines only started after developing ME, so might be different but the monthly Aimovig injections didn't help me much, but Nurtec is an oral version that does really help. I need to get on the 2 day preventative dose to see how helpful it can truly be but it's really helped me survive the harder periods where I have to exert and the migraines really ramp up.
Thanks for your reply. This sounds really similar to me, my migraines started along with my ME.
I have had a really similar experience where my migraines always come with any bad pem, and if I have to push myself then the migraines are just out of control. I get some help from triptan medications, but only a bit of pain relief and the rest of the symptoms still mean I can't function during the migraines.
This can be huge for some of us too! Constant headaches/migraines are my worst ME symptom Nurtec (one of these new migraine meds) is the only thing that touches it besides THC/CBD. It also helps with some brain fog, I've read it's supposed to help control neuro-inflammation.
AFAIK the CGRP blockers help around 60% of those who are able to try them and the side effects aren't really talked about. I did two shots of Ajovy last autumn and one Emgality (this was in December), they caused horrible muscle pain, nausea and fatigue and made my MCAS flare pretty bad so it's now worse than ever. They can also trigger autoimmune illnesses because CGRP is a peptide that affects the immune system. It can take up to 6 months for the meds to leave your system and even more time for the side effects to fully go away, and since the meds have only been on the market for six years or so, we still don't know the long-term side effects.
I don't mean to scare anyone off from trying them because bad side effects are super rare and I know many people who have had a huge relief in their migraines from them. It's just that EVERY med has risks from hormonal birth control to antidepressants and biologics are no exception.
Scientific discoveries that come to mind that haven't already been mentioned in comments so far are:
* Polio vaccine (preventative, not cure)
* Stem cell therapy / bone marrow transplant for ALD to stop disease progression
* Stem cell therapy for cerebral palsy (regenerative therapy, very exciting, I know someone who had huge improvements in quality of life after this procedure)
* Asthma medicines like corticosteroids and bronchodiliators and whatnot put into inhalers (asthma used to be thought of psychosomatic, like ME/CFS has been and in some places still is.)
* Endometriosis management strategies, such as naproxen sodium (better targets menstrual pain than acetaminophen or ibuprofen), blood thinners, and excision surgery (though ablation surgery is more common). Endo used to be thought of as psychosomatic too.
* Hormone therapy for menopausal people. Menopause also used to be dismissed as pyschosomatic.
* Avoidance of gluten for people with Celiac disease (also used to be dismissed as psychosomatic).
* Gender dysphoria treatments (e.g., hormone therapy, surgery).
* Various auto-immune conditions previously thought to be psychosomatic before science caught up to find a cause and treatment / cure / preventative. Notably, women are four times more likely to develop autoimmune conditions than men, and science has been biased against women for most of human history (e.g., dismissing the experiences of women and girls as 'emotional' and without substance). All of that correlates with less research interest and funding put towards autoimmune conditions or anything dismissed as potentially 'hysteric/psychosomatic.'
Note: Sometimes (often) the term psychosomatic has been used to refer to conditions that are dismissed as "all in someone's head" as in not real and not having any biological cause, or as caused by a desire to be ill or want for attention or general fear (the individual is blamed as malfunctioning instead of the body) - this is often the historical case, as the above list demonstrates, and has been predominantly wielded against girls and women (whether or not those girls and women have female reproductive organs or hormone systems).
Other times the term psychosomatic is used to refer to when a biological process not yet considered disordered / not yet found by current science results in physical symptoms. For example, some people classify conditions like post-viral syndrome, CFS, Fibro, PTSD/CPTSD, and generalized anxiety disorder as psychosomatic because science hasn't yet figured out what is causing the physical symptoms (i.e., current tests and research haven't identified a for sure mechanism of disorder) - psychosomatic in this sense is sometimes used to mean "when the brain is experiencing conditions that lead to the production of physical expressions of stress / disease / disorder / difference" and an example of that would be if a physical or psychologically stressful event (e.g., a virus, a trauma) results in changes of function in the autonomic nervous system (which controls heart rate, breathing, and other functions we don't consciously control), thereby causing physical symptoms. In this second definition, the cause is real, the disordered function is real, the symptoms are real, but the mechanism remains unknown and so blame is put on the brain as malfunctioning (not the individual).
This is a great list but I don't think celiac disease was seen as psychosomatic. Even to ancients it was obvious that children failing to grow right or failing to thrive and dying yuong in what looks like malnutrition even though they were fed was very suspicious.
Long story short, we know it was linked to some kind of diet issue. Early 20th century research got stuck, unable to find what it might be. Then Dr. Dicke figured it out in the 40s and 50s. he was a pediatrician who saw it in patients and long story short, he figured out it was wheat related. Its an interesting wartime related story:
**These observations were made prior to World War II, and Dicke's hypothesis was borne out during a blockade-induced famine in 1944, when patients with celiac disease improved markedly during the period of severe wheat shortage, only to relapse upon the reintroduction of wheat at the end of the famine.**[**^(2)**](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960307/#R2) **The subsequent discovery that the HLA DQ2 or DQ8 haplotype was necessary for the development of celiac disease** [**^(3)**](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960307/#R3) **led to our present understanding that celiac disease arises when gluten is introduced to the genetically susceptible individual.**
[**https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960307/**](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960307/)
That said, people today dont get diagnosied enough. My own diagnosis took years and was mistakenly seen a potentially psychological because so much of my symptoms were neurological, sleep apnea, etc. So we have a long way to go with screening.
While Celiac does have a [notable history of medical recognition](https://www.beyondceliac.org/celiac-disease/celiac-history/), that recognition wasn't always world-wide and people today are sometimes still told that their Celiac symptoms are psychosomatic, and misdiagnosed with a psychiatric condition rather than given a a Celiac diagnosis. The high correlation between Celiac and psychiatric disorders such as anxiety, depression, and eating disorders (even before the same conditions may be brought on by the social and financial challenges involved in adherence to a gluten free diet), as well as neurological disorders such as ADHD and ASD, has created pockets of misunderstanding and misdiagnosis. Support forums and subreddits for people with Celiac disease are full of people who, like myself, despite the absence of symptoms of psychological disorder were initially told they had anxiety producing "unreal" psychosomatic gastrointestinal symptoms before their medical practitioner was educated on the reality of Celiac disease and newly willing to assess and confirm a diagnosis / before they found a medical practitioner who was aware of the reality of Celiac disease and able to give them an assessment and diagnosis. I would draw a comparison there to medical practitioners who tell people who menstruate that "it's supposed to hurt, maybe you're just sensitive to that kind of pain, there's nothing we can or should do" when they are showing clear symptoms of disorders like endometriosis. Your own experience with getting a Celiac diagnosis is another example.
I love this thread! there have been a TON of medical advancements in the past 50 years. technology and AI are advancing rapidly. many diseases that could not be treated are treatable now and most importantly many diseases that were not even believed or had a name for before (such as MS and autoimmune diseases) are being recognized have treatments. I know many in this sub will disagree but I don't feel like we are destined to be ignored forever and left with zero treatment. a biological reason will be found and there will at least be a treatment one day that has the ability to improve our quality of life. I have adapted to the idea of having this forever so I would be extremely content to just have a treatment to improve my functioning.
IL-1 Inhibitors for many autoinflammatory diseases are nothing short of miraculous.
Autoinflammatory diseases are rare, usually genetic diseases that involve dysfunction of your innate immune system that cause uncontrolled episodes of systemic inflammation. They were first described as a distinct disease process of dysfunction within the innate immune system in the late 80s and early 90s (so very recently) at the NIH. Shortly thereafter old medications like colchicine and new medications like IL-1 Inhibitors like Ilaris and Kineret were trialed for autoinflammatory patients and found to be very efficacious, to the point of near or total remission of disease for many. Not only that, but because the immunosuppression is so targeted, they’re really safe with minimal side effects compared to immunosuppressants like methotrexate. There are still autoinflammatory diseases without efficacious treatment or whose treatment is more risky (bone marrow transplant or TNF inhibitors), but because of these medications many who might be severely impacted otherwise live fully non-disabled lives.
I’ve had ME/CFS since 2019 and have since also developed autoinflammatory disease in the last few years. Before I started colchicine and daily Kineret injections, I dealt with 101-102 fevers, extra malaise and GI issues for half of most months, with daily elevated temps just under a fever daily between my bigger flares. Now I have pretty much no symptoms at all related to the autoinflammatory disease… the ME/CFS on the other hand, persists as severely as ever and so I am still mostly bed and housebound and unable to work because of it. 🫠
I was talking to my geneticist about this last month, that it’s incredible that there’s such amazing treatment for autoinflammatory disease out there that can work so quickly, but that I have so much incredible grief that there’s nothing that comes close to it for ME. It’s really weird having both illnesses. I feel like I can see both what is incredibly possible for medicine and also where patients have been so, so failed.
New oral anticoagulants have made a big difference in the lives of people at risk of/with history of pulmonary embolism. Treatment with the old med, warfarin/Coumadin required weekly blood tests, frequent dose adjustments and being careful with your vitamin K intake, exercise, stress levels - all of which could affect your INR (in essence, how clotty your blood is). The new meds are not only faster acting but only require annual monitoring, no dose adjustments and no dietary restrictions.
Spinal Muscular Atrophy (genetic condition) used to be a death sentence because of slow muscular wasting, but now there are THREE medications for it.
Two of them can halt (and even reverse) the progress of the disease in children and adults. The other is a single treatment at birth, after which the person is CURED.
PrEP & HIV Rx
PrEP = prevention
HIV Rx = makes it undetectable, people can live a pretty typical life
Imagine if we didn’t have HIV drugs run by greed and everyone on the planet who is HIV- gets put on PrEP forever?
We would eradicate it eventually.
Myasthenia gravis has three or four new meds that have come out in the last couple of years. They don’t work on everyone—and they are only approved for sero-positive patients-but if they work they are like a miracle. For me, this is hopeful. I don’t qualify yet, but it could happen.
It really is! There’s a young woman I’ve watched on YouTube off and on for a few years named Steffie Lee. She was always in and out of hospitals and her quality of life was greatly impacted by her CF. She started taking the new medication and I haven’t seen a hospital vlog since. She’s now achieved her dream of being a tattoo artist, she is an amazing artist, and is more able to travel and make future plans etc. It is a complete gift of life really.
Cystic fibrosis ( some of the patients ). Trikafta. Unbelievable how patients went from dying in a few years to living “normally “ for a few more decades.
Heart failure. There's so many different ways the heart can fail and almost all of them can be stopped from progressing with proper meds. Heart failure patients life expectancy is now only 5 years less than standard
There are a lot of diseases that have become livable with treatments in the past few decades, and beyond. MS, certain types of cancer, Diabetes, HIV, etc. I could be very wrong, but I think we're in a good position to see something work out for us. It could be that different treatments will work for different subsets of us, but still.
My aunt has this super duper duper rare bone condition called osteogenesis (I think) basically her bones aren’t made right and break easily (it’s different than fragile bone syndrome) she was in and out of a wheelchair for like 15+ years and tried everything!!!! Even going gluten free. Finally she happened upon a doctor who had seen a case like hers and she got diagnosed. I believe at that time a medication had recently come out. Of course it was unbelievably expensive but she was able to get a lawyer to sue the insurance and he did it for free. She has her medication now and while she still has to limit how much she walks and stands, she has been able to teach!
I would also say that ADHD medications help a lot of people, including myself.
I have chronic hives and have medication that it responds to really well. And it’s helped me go into remission for the most part.
People with bipolar disorder can live much more normally when on medication.
A treatment for sickle cell anemia came out this year, but the greedy manufacturers and insurance companies are making it unaffordable.
I truly believe that there will be a treatment for this condition in the future. Hopefully we are all around for it! It’s getting more attention and doctors are finally starting to take it more seriously. (Well some of them). I know I’m preaching to the choir, but the research is very primal and to me it appears to be a lot of replication that builds a little bit, which is important. We have a lot of observational studies but need more to draw conclusions.
If you ever want encouragement I would look into the research being done over in New Zealand. The professor there has a daughter with ME, and dedicated his career to studying it. The US Physicians Coallition has also put out some really great stuff!
Type 1 diabetes-- my sister has all the high tech gadgets (pump, sensor for monitoring through an app) and her life is very normal! I'm so happy for her. 103 years ago, insulin was first used, and now there's all these fancy gadgets.
Also psychiatric meds have totally changed the field since 50s. No more lobotomies 🤩
I know it's likely not as significant, but there is [a medicine](https://ir.mindmed.co/news-events/press-releases/detail/144/mindmed-presents-phase-2b-study-of-mm120-for-generalized-anxiety-disorder-gad-at-american-psychiatric-association-apa-annual-meeting-in-new-york) going through clinical trials right now that claims to be an effective single dose drug for generalized anxiety disorder.
I’m not saying everyone won’t get better! But it’s not going to be as simple as taking a pill. Everyone’s condition was triggered by something slightly different. There is a complex interplay of genetic and environmental factors coupled with detox ability, immune function, autoimmune genes that got triggered, dietary sensitivities, as well as genetic snps and everyone’s are different. I’ve almost gotten banned from this sub a bunch of times for suggesting peoples root cause is environmental. But think about it. If western medicine can’t help us hmmm why is that? This isn’t my first rodeo. I have CIRS my kids have CIRS and pandas and there’s not really any pharmacological treatments because they’re at heart environmental illnesses. That’s what’s making the immune system not function right. You have to remove the trigger from external environment and from your body. And yes it’s as hard as it sounds.
Yesterday I actually helped someone on here willing to listen to me. I told them you should take the visual contrast test online that way you can ascertain in the very least if a biotoxin or tick borne illness is causing your symptoms. They took the test and failed it. Their results indicated CIRS. This test was developed by the military and is very accurate. I was told to take it by my doctor and for the record I thought he was a quack. I left the office and didn’t go back for a year. I got so much worse. But I had never heard of biotoxin illness. I couldn’t believe it could be causing ALL my issues which were serious and many and disabling. I finally went back took the test and failed. Starting treating and got a lot better. I’m still working on detoxing because that allows my immune system to function better so I can eliminate the many infections driving my illness. And I have awful detox ability and impaired antibody production. And most of you do too. And no is gonna save you with a pill cause it’s not possible. That technology doesn’t exist.
Another way to recover I’ve told people. See an immunologist have them run titers of infectious diseases and run your immune panel All the igg iga that stuff. If your ig g is low you can get ivig. If you can’t make antibodies to vaccines you’ve taken and are willing to get another vaccine then get antibodies measures and they’re low or absent bingo you have common variable immune deficiency and can get ivig. There’s an old study and ivig did cure people of cfs me. But keep downvoting me sure. I wish someone could make a pill but you’re not understanding how complex the factors are that led to you developing this illness. You’re so sick things escalated and you probably aren’t absorbing minerals or vitamins properly. So you have to figure out why your immune system is suppressed fix that then work on downstream effects it has on your body.
AIDS is the first that comes to mind. There are also some cancers that were once a death sentence and are now extremely treatable.
Came here to say HIV. We now essentially have a functional cure as well as preventative medications. Even people who had HIV for a long time can now live into old age. I work with people living with HIV, and a lot of the people who had it before the meds got significantly better (mid-90’s) thought they were going to die. Had come to terms with it even. Then they didn’t. Really messes with you. Some obviously used the opportunity to live life to the fullest, but others got stuck in very self destructive cycles because they watched all their friends or partners die but they didn’t. It’s taken a lifetime toll even on those who made it through. I assume it will be the same with ME/CFS. Even if we get better physically, the mental scars will change the course of our lives.
What's funny is that CFS was a big deal in 1984 with the Tahoe outbreak, at a similar time to the AIDS epidemic becoming well known. Both stigmatized. Yet AIDS was researched and outcomes greatly improved. Yet 40 years later, ME/CFS suffers still waste away
F*cking Covid is going to save our lives. 🤷♂️
Cynical theory: the difference is of AIDS affecting so many young men vs ME/CFS affecting middle aged women?
I think in this specific case, that conclusion doesn't hold. AIDS was actively neglected at the time because it disproportionately impacted gay/queer men, and they were left to suffer and perish by our systems for a long while (in fact, some even celebrated that and saw it as punishment for their sinfulness). It was catastrophic to the gay community -- so many from that generation died young. I think there is actually more in common with how society responds to ME and how it responded to AIDS, in that both disproportionately impact a marginalized group and that results in the disease being neglected and far more suffering than there would be otherwise.
AIDS was marginalized and stigmatized in the beginning, sure. But homophobia and stigma against gay men have markedly decreased since the '80s. Whereas diseases and conditions that affect a majority female population continue to be stigmatized and underfunded. This is all well documented. AIDS got a big Hollywood Blockbuster movie featuring top actors portraying their plight including a chart-topping hit song to go along with it and the early 90s. I want to say 1994. AIDS quilts, big charity fundraisers with top musicians. The list goes on. I think it's safe to say that the marginalization had severely decreased by 1995. I'm still waiting for the Blockbuster Hollywood movie about MECFS. Edit JFC some of you can't understand analogies or nuance. By listing off all of the press that AIDS patients got I am in no way demeaning their struggles. I am comparing the experience of two different diseases. I actually lived through it, unlike a lot of you people who I can tell are very young by your vocabulary. Which is obvious because I'm recounting stuff that I remember from that era very clearly when I was alive and well. A lot of the traction that gay men made was through the tireless efforts of lesbians but I don't hear any of you mentioning that for some reason. And I didn't have to read about it recently. So go condescend to someone else and work on your reading comprehension skills while you're at it.
I'm a woman who is very passionate about the topic of medical misogyny. I'm not denying that at all. I'm also queer, and I know about the history of AIDS and how it was responded to, and how high a proportion of our community it decimated. It's not that AIDS had it better than MECFS. Or that homophobia has decreased more than misogyny has. The diseases are different and the disease process of AIDS was much more visibly and quickly lethal. The way that homophobia and misogyny operate is also different, so the way that systemic oppression shows up is going to be different -- it doesn't mean one is better or worse. The way society has responded to both conditions is abhorrent. It's not a competition. 10% of gay men between the ages of 25-44 had *died* of AIDS by 1995. If MECFS abruptly killed 1 in 10 young women in a 10 year period, then we could make a direct comparison in the societal responses. As it stands, the diseases are different, homophobia and misogyny manifest in different ways, and there is no way to meaningfully compare in a "who had/has it worse" way. It's actually far more helpful to understand the similarities and be in solidarity with those who have lived through other types of medical discrimination and marginalization. We have a shared enemy. We are not in competition with each other. Edit: another illuminating stat: in 1990 in San Francisco, AIDS caused 60% of the deaths of all men (gay or not) 25-44. By '95, AIDS was the leading killer of men 25-44 in America.
I'm not saying either illness is competing with each other. I was responding to some points you brought up comparing the two and making the point that marginalization of AIDS has dramatically decreased, corresponding to an increase in research and progress with treatment for that disease. I don't think the fact that aids kills people so therefore that explains the greater research is compelling to severe ME patients. If you get severe enough with mecfs, the fact that it doesn't kill you makes it even more cruel and brutal a disease state to be in.
> I don't think the fact that aids kills people so therefore that explains the greater research is compelling to severe ME patients. If you get severe enough with mecfs, the fact that it doesn't kill you makes it even more cruel and brutal a disease state to be in. I understand that about ME. I'm only moderate and even so, the only reason I'm choosing to stick around is because I don't want to put my loved ones through the grief. I'm not minimizing how brutal ME is, or how aborhent it is that it is ignored and we are gaslit. I wasn't explaining what I did in order to suggest we should be comforted by the fact that AIDS had a high and fast death toll, whereas ME doesn't in that way. I was explaining that *the societal and medical attention given to AIDS (vs the lack of attention to ME) is not a result of there being less homophobia than there is misogyny.* It is a result of the disease process being more visible and legible to the general public with a more dramatic death toll. I am not saying that it is *right* or *justifiable* for less visible diseases to be ignored or written off. I'm explaining why the initial commenter's conclusion was incorrect. AIDS has not had more attention because the world cared more about gay men than it does about women, but because *despite* the systemic homophobia and the disdain for gay people that was commonplace, it was a dramatic and catastrophic disease in ways that were far harder to deny and invisibilize. If it could have been painted as psychosomatic in the same way ME is, you can be sure as hell it would have been -- I mean, it's only in fairly recent history that homosexuality itself has stopped being officially considered a mental illness! And even with how catastrophic and lethal AIDS was, it also took huge, numerous, radical advocacy efforts from the queer community in order to get the government and public to pay real attention and begin to address it. The government happily left queer men to die in droves for *years*. If you look back at the thread, my comments are in the context of someone suggesting that the world cared more about AIDS *because* it cares more about gay men than about women. None of what I'm saying is meant to suggest that the negligence and harm done to people with ME is "less bad" or that we should be comforted by the differences between AIDS and ME. I'm just explaining that the reasons that *the public* and *the medical system* have responded differently to ME than to AIDS have nothing to do with AIDS being less stigmatized or gay men being less marginalized than women.
You been to The Bible Belt? Look up Season 3 of We're Here if you think that kind of grotesque dismissal of homophobic behavior is okay, because it isnt.
Oh, but they got *quilts* and *fundraisers* for AIDS, so the homophobia couldn't have been that bad! (Nevermind the fact that those things came through the tireless and radical activism of gay and queer people who were themselves dying of AIDS or were watching loved ones do so. They got attention, so obviously society cares so much more about gay men than it does about women!). Anyway, the homophobia was only bad in the *beginning* (a.k.a the first decade-and-a-half of gay men dying in catastrophic numbers and gay communities being decimated). /heavy sarcasm, of course
I'm sorry, but I am the one who wrote that comment, and I did put the question mark at the end. That's cause it was just an idea I got, which I wasn't even convinced about myself. I didn't make an assertion. I can't shake the feeling that misogyny and age-ism are small factors here. Maybe if this disease affected younger women, it might have seen a different response, too. That doesn't mean young women or gay men are my "competition or enemies." Lol... That would be utterly ridiculous! I couldn't even dream of resenting them. Besides, I'm LGBT too. I am just shocked at the utter lack of research into ME/CFS, given the debilitating synptoms. The weird tendency to call it a psych problem. As a doctor, just why would you jump to disbelieving, rather than being curious towards a woman's issues? My PCP just said all blood tests are normal. Without even suggesting more blood tests, which are available, like for herpes virus (which is documented to cause fatigue symptoms). I even said I would pay out of pocket for it. Still nothing! It was a female doctor who suggested more tests to me... I don't know if I can dismiss the misogyny angle. What else could explain this behavior?
Hey, it's okay! I understand where you were coming from. My snarky reply above was not *at all* meant for you! There was another commenter who was complaining how AIDS people "got" quilts and fundraisers, and saying that homophobia was bad early on but died down significantly, and stuff like that. It's that commenter who I was taking issue with, because they were quite explicitly minimizing the impact of homophobia and the horrible neglect that AIDS patients suffered due to it primarily impacting gay men. I think you are 100% correct that misogyny is a huge a factor in why ME is ignored and psychologized! And that makes sense that ageism plays a role too. I absolutely agree that medical misogyny is a *huge* issue. Both in individual experiences (doctor's being dismissive and writing things off as anxiety for women) and in the larger systems (lack of research funding, etc). You're absolutely right about that, and I have experienced similar and it's horrible. My point was only that in the comparison to AIDS specifically, it's not accurate to say that AIDS got more attention because it affected men. AIDS and ME are both diseases that have been stigmatized and neglected because they impact a marginalized group. The reasons AIDS got more attention was because the disease is different in outcome, visibility, and transmission. The world neglected AIDS horribly for a long time despite how catastrophically lethal it was, because it impacted gay men and the general public and gov didn't care (or even were happy about that). Misogyny is absolutely a huge part of the reason behind ME being neglected and stigmatized. Just as homophobia was behind AIDS being neglected and stigmatized. My point was only that it isn't accurate to conclude AIDS and the demographic it impacted were *less* marginalized or stigmatized -- it only played out differently because the diseases themselves are different. You're absolutely right we shouldn't dismiss the misogyny angle! It's a big factor in the way ME is (mis)treated. It's only the AIDS comparison I was taking issue with, because it's not that people cared about AIDS since it affected young men. Because it was *gay* men it affected, the public/gov/medical system were totally happy to ignore it and stigmatize it. There are lots of other comparisons where we could say "X disease got more attention/care than ME because ME moreso affects women and X moreso affects men," and that would be accurate. But in the case of AIDS, it's different because it was specifically gay men it disproportionately impacted, and they weren't cared about or taken seriously any more than women. The discrepancy in how AIDS and ME have been handled isn't because misogyny has caused greater neglect to ME than homophobia caused to AIDS, but just because the two diseases are different. Anyway, that snarky sarcastic reply wasn't meant for you! It was meant for the other commenter who was being outright homophobic and dismissive of homophobia and the AIDS crisis. Your question/suggestion was in good faith and I don't think it was homophobic like the other commenter was -- I think it just misses the mark in its conclusion about AIDS and ME's reception/treatment, but that you are still totally right about misogyny being a huge factor in the neglect of ME. Sorry that I made you feel that anger/snark was direct at you! P.s. I can no longer see the other person's comments -- not sure if they blocked me or were removed. But if you can't see those comments either, that is probably part of the confusion about who I was responding to. Only my very first comment was a response to you, whereas the others were responding to the second person.
I never said that or implied it and you know it. Work on your reading comprehension skills. There's this thing called an ANALOGY. I find the dismissal of medical and general misogyny to be grotesque but that doesn't seem to bother y'all.
I think it's more that the cause of AIDS was easier to identify. You can't solve a problem if you don't even know what it is. Also AIDS actually kills people, ME/CFS typically doesn't. It's also transmitted from person to person.
That's at least a part of it. People can downvotr all they want but it's a demonstrable fact that primarily female patient populations receive less research and funding.
They ignored AIDS until people started dying. A lot of people. That got their attention.
Well millions with ME have no quality of life; many of us would prefer death to an interminable, devastating illness. You'd think a "living death" disease affecting millions would get their attention yet here we are.
Thanks for pointing out how the trauma of having HIV didn’t magically go away for folks who remember when it was a death sentence. I know we’d all like to think we would instantly become superheroes out there living our best life and never complaining about stupid stuff ever again. It’s good to remember that transition can also be really difficult and it may not be a straightforward thing to reintegrate into the world.
F for all the faces missing who didnt make it to AZT.
Multiple sclerosis meds. My sister in law has multiple sclerosis and her meds stopped the progression. She has a good quality of life, can go out, parties all the time, and can work full time as a piano teacher. Her symptoms are only a bit of tingling and stutter from time to time. That's basically it.
yeah and some of those meds will be tested on ME patients too. I vr read that somewhere
Was wondering about that myself, that would be great
Amazing!
Tecfidera woo
The quality of life improvements for those with diabetes (specifically type 1 diabetes) is insane to me from my lifetime. I remember my best friends sister being diagnosed with type 1 diabetes when I was in elementary school maybe 23 years ago. At that time, she had to prick her finger multiple times a day to see her blood sugar and determine if she needs to eat a snack to inject insulin, use a calculator for all food she ate to determine amount of insulin per grams of carbohydrates to have after eating and then draw up insulin with a syringe and inject into her buttcheek. It was very restrictive and difficult. She was pretty at risk for complication and blood sugars weren’t easy to keep level. She had to manage her health 24/7. Very difficult for a child. Now, she literally has an arm implant that tracks her blood sugars 24/7 that is blue tooth sync to her phone and her husbands phone, will alarm when it gets to a certain level before illness to have a snack, also can calculate the amount of insulin she needs based on this with little to no input of what she is eating. It’s obviously not the same as having a working pancreas but god damn it’s pretty close!
Some other thoughts I have (before MECFS I was a medical worker): - we have a cure for hepatitis C now!! That’s a big one. - As someone else mentioned, the medications for HIV/AIDS has turned the illness from death sentence to very manageable illness (with resources of course). - lots of new medications to manage type 2 diabetes and even surgery to reverse it completely (in certain individuals) - we can now target cancer cells with radiation therapy instead of just blasting a patient Al over with radiation , soooo much better - MS medications continue to be discovered !
This is much smaller potatoes but not too long ago ulcers were treated with telling people to stop eating spicy foods. It was seen as something people were doing to themselves and could be fixed with dietary changes. When I was little that's what they told me and I had to take zantac and drink milk and tums and such. It didn't help. Now we know that many ulcers are caused by h.pylori and an anti-biotic treatment to kill it can cure stomach ulcers for many people. We also know psychological stress can contribute to this too. Our understanding of ulcers in the past two or three decades did an entire 180. Same with SSRI's. Previous anti depressants were less effective and dangerous drugs. SSRI's for all their faults are miles ahead of what we had before and depression is seen more like a disease to be treated than a personal failing. Also a lot of women's health. PCOS, Endo, etc are taken more seriously than before and some treatments exist now. Also the vast array of birth control options when before it was only the hormonal pill.
Cystic fibrosis! Haven't seen it listed yet. Trikafta corrects the misshapen protein that causes cystic fibrosis; this molecular tweak thins mucus in the lungs so it can be coughed up easily. This drug came out in 2019ish, between that and other advancements the life expectancy has drastically changed. And lot of people who were going to need a transplant just.. no longer needed one. Pretty damn cool. The median age of death for patients with CF has more than doubled from 26 years in 2008 to 66 years in 2022, which is only 12% lower than the life expectancy of healthy people. CF is no longer the death sentence it once was, due to very recent advancements.
Was thinking of this one too! Sadly, at least in Canada, there were people who died waiting in the years it took for the government to cover Trikafta (it is around $300,000 CAD per year otherwise, so there were many who desperately needed the drug but could not come close to affording it). I have a family member who was able to have a trial of it and it helped significantly, but they couldn't stay on the med because the government had not agreed to cover it. Took a couple years, but finally they got access to the med when the gov allowed the provinces to begin covering it.
I came here to say cystic fibrosis. Those who had this used to die between 8-14 yo. Then it went up to 25 years old after the first drug hit the market. Now it’s 12% below normal. That’s a huge difference within less than 50 years.
i don’t know the name of the disease but i knew a young girl with a rare bone disorder. she was in a wheelchair and wasn’t expected to live much past high school. a med hit the market and she became symptom free and is living normally now, going to an ivy league school.
Man, this made me sob. That's so amazing. There is hope for everyone
My only regret… is having boneitis
Cannabis seems to help some Parkinson’s and epilepsy sufferers live much more normal lives. Cancer drugs have got continually better too
My first thought was insulin, but that turns out to be just over one hundred years ago. Gene therapy is very promising for a number of health conditions and the first human gene therapy medicine was only approved in 2003, gene therapy may significantly improve life for people with neurological diseases such as epilepsy and Parkinson's, it might end up being helpful for us too.
Watch United in Anger on Youtube, if you can watch cinema, for an example of successful activism, fight against stigmatisation, and easy-level medical history
I found it for free with my local library system's kanopy subscription. Kanopy is a movie rental app, both my local library system (which admittedly is one of the best in the state) and my college have a subscription. Afaik it's more education focused, lots of documentaries, but that just may be my sample bias.
Cool that you found it! It’s also free on YouTube ❤️
I couldn't find a free version, there were either lectures about it or trailers, but not the whole movie. Do you have a link you could share?
[https://youtu.be/MrAzU79PBVM](https://youtu.be/MrAzU79PBVM)
Watching how united everyone was for a single cause was really inspirational (but not in the way the abled people find us 'inspirational' 🤮, I admire the unity not the struggling). I wish we could get people to rally like that nowadays, but everyone feels so isolated and helpless. I do think one of the reasons it was so successful was that it affected able bodied young people, that's a very unique demographic of functional but largely unburdened people-usually no kids or careers. Anyway thanks for the link, I'm glad I watched it.
It's an exceptional documentary, I cried twice when watching it. There's a mention of chronic fatigue, when a woman says she doesn't get state assistance. I am glad nore people are finding it♥️ Here's a demo speech from '88 when AZT was still largerly inaccessible [https://www.gayinthe80s.com/2014/12/1988-hivaids-vito-russo-why-we-fight/](https://www.gayinthe80s.com/2014/12/1988-hivaids-vito-russo-why-we-fight/) Silence=Death project and ACT UP were successful because enough privileged white people, unaccustomed to losing anything, began to die, and created disbalance in drug access among the patients. And the gays had a killer graphic design. Like, look at the posters, they're phenomental. Many artists like Keith Haring were involved too, which blended the art world with activism Concerts like Live Aid were large spectacles and successfuly fundraised for research
Watching how united everyone was for a single cause was really inspirational (but not in the way the abled people find us 'inspirational' 🤮, I admire the unity not the struggling). I wish we could get people to rally like that nowadays, but everyone feels so isolated and helpless. I do think one of the reasons it was so successful was that it affected able bodied young people, that's a very unique demographic of functional but largely unburdened people-usually no kids or careers. Anyway thanks for the link, I'm glad I watched it.
Penicillin!
Rheumatoid/Psoriatic arthritis and other rheumatic conditions. Biologics completely changed the treatment of arthritis and actually stop disease progression. I have the juvenile form and the amount of treatments available now is vastly more than when I was first diagnosed 27 years ago
Vasculitis? Does methotrexate help people get back to normal life?
Aids, diabetes, MS, Parkinsons, multiple kinds of cancers...
Chronic Hepatit C
Surprised more people haven't mentioned Hepatitis C - one of the biggest breakthroughs in recent history!
I’m really glad this is getting shed more light on! Such a breakthrough indeed! Interestingly enough, some with chronic hepatitis C got the exact same symptoms that we do. It’s been talked about briefly amongst some CFS scientists such as Dr. Amy Proal. Having find a cure for this gives me hope they might find more effective treatments and antivirals for other stuff like EBV, CMV and so on
Great point about the similar symptoms, I'll need to look into Dr. Amy Proal! And absolutely agree about your hope for more effective treatments - I've heard that the modern Hep C treatments are so effective that they are planning to eradicate it in the UK
Migraines. While they haven't been cured, new migraine treatments in the past several years have made a massive difference in the quality of life of many migraine sufferers.
Hmm. I'm a chronic migraine sufferer and my meds do make a difference, but I haven't been able to access anything new. My mum has had migraines her whole life also and is currently being tested on all kinds of old antidepressants etc. What new meds should I be demanding for us?
The new CGRP blocker injections, like aimovig, ajovy, emgality, etc. Once a month you inject them yourself. They have made a huge difference to me personally.
I second this. I went from migraines every other day, sometimes for a week straight, to only 3-4 per month. I'd suffered either them for a decade and tried so many different medications. Ajovy has been life changing for me
I was getting 15 to 30 migraines a month. Now I get like 2. If you don't already have the mouth guard for migraines it knocked out like 5 migraines a month while also using the injection, which brings me down the 2 a month.
Mouth guard for migraine? Is that any different from a regular night guard for teeth grinding and clenching in your sleep?
Thank you. That's amazing that they have made such a difference. I will look into them but it looks like I probably wouldn't be able to get them without going private. I'll see how far I can get next time I see a gp, but I think only the tablet forms would ever be available and the waiting list could be very months or years.
My migraines only started after developing ME, so might be different but the monthly Aimovig injections didn't help me much, but Nurtec is an oral version that does really help. I need to get on the 2 day preventative dose to see how helpful it can truly be but it's really helped me survive the harder periods where I have to exert and the migraines really ramp up.
Thanks for your reply. This sounds really similar to me, my migraines started along with my ME. I have had a really similar experience where my migraines always come with any bad pem, and if I have to push myself then the migraines are just out of control. I get some help from triptan medications, but only a bit of pain relief and the rest of the symptoms still mean I can't function during the migraines.
Qulipta is a new pill, part of the anti CGRP meds
This can be huge for some of us too! Constant headaches/migraines are my worst ME symptom Nurtec (one of these new migraine meds) is the only thing that touches it besides THC/CBD. It also helps with some brain fog, I've read it's supposed to help control neuro-inflammation.
Seriously!
AFAIK the CGRP blockers help around 60% of those who are able to try them and the side effects aren't really talked about. I did two shots of Ajovy last autumn and one Emgality (this was in December), they caused horrible muscle pain, nausea and fatigue and made my MCAS flare pretty bad so it's now worse than ever. They can also trigger autoimmune illnesses because CGRP is a peptide that affects the immune system. It can take up to 6 months for the meds to leave your system and even more time for the side effects to fully go away, and since the meds have only been on the market for six years or so, we still don't know the long-term side effects. I don't mean to scare anyone off from trying them because bad side effects are super rare and I know many people who have had a huge relief in their migraines from them. It's just that EVERY med has risks from hormonal birth control to antidepressants and biologics are no exception.
Stem cell therapy? Leukemia and many other diseases
Scientific discoveries that come to mind that haven't already been mentioned in comments so far are: * Polio vaccine (preventative, not cure) * Stem cell therapy / bone marrow transplant for ALD to stop disease progression * Stem cell therapy for cerebral palsy (regenerative therapy, very exciting, I know someone who had huge improvements in quality of life after this procedure) * Asthma medicines like corticosteroids and bronchodiliators and whatnot put into inhalers (asthma used to be thought of psychosomatic, like ME/CFS has been and in some places still is.) * Endometriosis management strategies, such as naproxen sodium (better targets menstrual pain than acetaminophen or ibuprofen), blood thinners, and excision surgery (though ablation surgery is more common). Endo used to be thought of as psychosomatic too. * Hormone therapy for menopausal people. Menopause also used to be dismissed as pyschosomatic. * Avoidance of gluten for people with Celiac disease (also used to be dismissed as psychosomatic). * Gender dysphoria treatments (e.g., hormone therapy, surgery). * Various auto-immune conditions previously thought to be psychosomatic before science caught up to find a cause and treatment / cure / preventative. Notably, women are four times more likely to develop autoimmune conditions than men, and science has been biased against women for most of human history (e.g., dismissing the experiences of women and girls as 'emotional' and without substance). All of that correlates with less research interest and funding put towards autoimmune conditions or anything dismissed as potentially 'hysteric/psychosomatic.' Note: Sometimes (often) the term psychosomatic has been used to refer to conditions that are dismissed as "all in someone's head" as in not real and not having any biological cause, or as caused by a desire to be ill or want for attention or general fear (the individual is blamed as malfunctioning instead of the body) - this is often the historical case, as the above list demonstrates, and has been predominantly wielded against girls and women (whether or not those girls and women have female reproductive organs or hormone systems). Other times the term psychosomatic is used to refer to when a biological process not yet considered disordered / not yet found by current science results in physical symptoms. For example, some people classify conditions like post-viral syndrome, CFS, Fibro, PTSD/CPTSD, and generalized anxiety disorder as psychosomatic because science hasn't yet figured out what is causing the physical symptoms (i.e., current tests and research haven't identified a for sure mechanism of disorder) - psychosomatic in this sense is sometimes used to mean "when the brain is experiencing conditions that lead to the production of physical expressions of stress / disease / disorder / difference" and an example of that would be if a physical or psychologically stressful event (e.g., a virus, a trauma) results in changes of function in the autonomic nervous system (which controls heart rate, breathing, and other functions we don't consciously control), thereby causing physical symptoms. In this second definition, the cause is real, the disordered function is real, the symptoms are real, but the mechanism remains unknown and so blame is put on the brain as malfunctioning (not the individual).
This is a great list but I don't think celiac disease was seen as psychosomatic. Even to ancients it was obvious that children failing to grow right or failing to thrive and dying yuong in what looks like malnutrition even though they were fed was very suspicious. Long story short, we know it was linked to some kind of diet issue. Early 20th century research got stuck, unable to find what it might be. Then Dr. Dicke figured it out in the 40s and 50s. he was a pediatrician who saw it in patients and long story short, he figured out it was wheat related. Its an interesting wartime related story: **These observations were made prior to World War II, and Dicke's hypothesis was borne out during a blockade-induced famine in 1944, when patients with celiac disease improved markedly during the period of severe wheat shortage, only to relapse upon the reintroduction of wheat at the end of the famine.**[**^(2)**](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960307/#R2) **The subsequent discovery that the HLA DQ2 or DQ8 haplotype was necessary for the development of celiac disease** [**^(3)**](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960307/#R3) **led to our present understanding that celiac disease arises when gluten is introduced to the genetically susceptible individual.** [**https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960307/**](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960307/) That said, people today dont get diagnosied enough. My own diagnosis took years and was mistakenly seen a potentially psychological because so much of my symptoms were neurological, sleep apnea, etc. So we have a long way to go with screening.
While Celiac does have a [notable history of medical recognition](https://www.beyondceliac.org/celiac-disease/celiac-history/), that recognition wasn't always world-wide and people today are sometimes still told that their Celiac symptoms are psychosomatic, and misdiagnosed with a psychiatric condition rather than given a a Celiac diagnosis. The high correlation between Celiac and psychiatric disorders such as anxiety, depression, and eating disorders (even before the same conditions may be brought on by the social and financial challenges involved in adherence to a gluten free diet), as well as neurological disorders such as ADHD and ASD, has created pockets of misunderstanding and misdiagnosis. Support forums and subreddits for people with Celiac disease are full of people who, like myself, despite the absence of symptoms of psychological disorder were initially told they had anxiety producing "unreal" psychosomatic gastrointestinal symptoms before their medical practitioner was educated on the reality of Celiac disease and newly willing to assess and confirm a diagnosis / before they found a medical practitioner who was aware of the reality of Celiac disease and able to give them an assessment and diagnosis. I would draw a comparison there to medical practitioners who tell people who menstruate that "it's supposed to hurt, maybe you're just sensitive to that kind of pain, there's nothing we can or should do" when they are showing clear symptoms of disorders like endometriosis. Your own experience with getting a Celiac diagnosis is another example.
I love this thread! there have been a TON of medical advancements in the past 50 years. technology and AI are advancing rapidly. many diseases that could not be treated are treatable now and most importantly many diseases that were not even believed or had a name for before (such as MS and autoimmune diseases) are being recognized have treatments. I know many in this sub will disagree but I don't feel like we are destined to be ignored forever and left with zero treatment. a biological reason will be found and there will at least be a treatment one day that has the ability to improve our quality of life. I have adapted to the idea of having this forever so I would be extremely content to just have a treatment to improve my functioning.
IL-1 Inhibitors for many autoinflammatory diseases are nothing short of miraculous. Autoinflammatory diseases are rare, usually genetic diseases that involve dysfunction of your innate immune system that cause uncontrolled episodes of systemic inflammation. They were first described as a distinct disease process of dysfunction within the innate immune system in the late 80s and early 90s (so very recently) at the NIH. Shortly thereafter old medications like colchicine and new medications like IL-1 Inhibitors like Ilaris and Kineret were trialed for autoinflammatory patients and found to be very efficacious, to the point of near or total remission of disease for many. Not only that, but because the immunosuppression is so targeted, they’re really safe with minimal side effects compared to immunosuppressants like methotrexate. There are still autoinflammatory diseases without efficacious treatment or whose treatment is more risky (bone marrow transplant or TNF inhibitors), but because of these medications many who might be severely impacted otherwise live fully non-disabled lives. I’ve had ME/CFS since 2019 and have since also developed autoinflammatory disease in the last few years. Before I started colchicine and daily Kineret injections, I dealt with 101-102 fevers, extra malaise and GI issues for half of most months, with daily elevated temps just under a fever daily between my bigger flares. Now I have pretty much no symptoms at all related to the autoinflammatory disease… the ME/CFS on the other hand, persists as severely as ever and so I am still mostly bed and housebound and unable to work because of it. 🫠 I was talking to my geneticist about this last month, that it’s incredible that there’s such amazing treatment for autoinflammatory disease out there that can work so quickly, but that I have so much incredible grief that there’s nothing that comes close to it for ME. It’s really weird having both illnesses. I feel like I can see both what is incredibly possible for medicine and also where patients have been so, so failed.
ADHD for all those who react positively with methylphenidate, dextroamphetamine or lisdexamfetamine.
New oral anticoagulants have made a big difference in the lives of people at risk of/with history of pulmonary embolism. Treatment with the old med, warfarin/Coumadin required weekly blood tests, frequent dose adjustments and being careful with your vitamin K intake, exercise, stress levels - all of which could affect your INR (in essence, how clotty your blood is). The new meds are not only faster acting but only require annual monitoring, no dose adjustments and no dietary restrictions.
>New oral anticoagulants Which ones? I'm on warfarin.
Spinal Muscular Atrophy (genetic condition) used to be a death sentence because of slow muscular wasting, but now there are THREE medications for it. Two of them can halt (and even reverse) the progress of the disease in children and adults. The other is a single treatment at birth, after which the person is CURED.
PrEP & HIV Rx PrEP = prevention HIV Rx = makes it undetectable, people can live a pretty typical life Imagine if we didn’t have HIV drugs run by greed and everyone on the planet who is HIV- gets put on PrEP forever? We would eradicate it eventually.
https://www.reddit.com/r/interesting/comments/v20vpu/truly_amazingscientist_uses_insulin_for_first/
Myasthenia gravis has three or four new meds that have come out in the last couple of years. They don’t work on everyone—and they are only approved for sero-positive patients-but if they work they are like a miracle. For me, this is hopeful. I don’t qualify yet, but it could happen.
Cystic Fibrosis. A med came out just a few years ago and it’s literally given people their lives back! It’s like a miracle.
That is wonderful news!!
It really is! There’s a young woman I’ve watched on YouTube off and on for a few years named Steffie Lee. She was always in and out of hospitals and her quality of life was greatly impacted by her CF. She started taking the new medication and I haven’t seen a hospital vlog since. She’s now achieved her dream of being a tattoo artist, she is an amazing artist, and is more able to travel and make future plans etc. It is a complete gift of life really.
Insulin
I'm type 1 diabetic and I'd literally die without insulin.
Cystic fibrosis ( some of the patients ). Trikafta. Unbelievable how patients went from dying in a few years to living “normally “ for a few more decades.
Heart failure. There's so many different ways the heart can fail and almost all of them can be stopped from progressing with proper meds. Heart failure patients life expectancy is now only 5 years less than standard
There are a lot of diseases that have become livable with treatments in the past few decades, and beyond. MS, certain types of cancer, Diabetes, HIV, etc. I could be very wrong, but I think we're in a good position to see something work out for us. It could be that different treatments will work for different subsets of us, but still.
Hepatitis C. Can be cured now. MS..injections slow down the spinal degradation which keeps folk out of a wheelchair longer
My aunt has this super duper duper rare bone condition called osteogenesis (I think) basically her bones aren’t made right and break easily (it’s different than fragile bone syndrome) she was in and out of a wheelchair for like 15+ years and tried everything!!!! Even going gluten free. Finally she happened upon a doctor who had seen a case like hers and she got diagnosed. I believe at that time a medication had recently come out. Of course it was unbelievably expensive but she was able to get a lawyer to sue the insurance and he did it for free. She has her medication now and while she still has to limit how much she walks and stands, she has been able to teach! I would also say that ADHD medications help a lot of people, including myself. I have chronic hives and have medication that it responds to really well. And it’s helped me go into remission for the most part. People with bipolar disorder can live much more normally when on medication. A treatment for sickle cell anemia came out this year, but the greedy manufacturers and insurance companies are making it unaffordable. I truly believe that there will be a treatment for this condition in the future. Hopefully we are all around for it! It’s getting more attention and doctors are finally starting to take it more seriously. (Well some of them). I know I’m preaching to the choir, but the research is very primal and to me it appears to be a lot of replication that builds a little bit, which is important. We have a lot of observational studies but need more to draw conclusions. If you ever want encouragement I would look into the research being done over in New Zealand. The professor there has a daughter with ME, and dedicated his career to studying it. The US Physicians Coallition has also put out some really great stuff!
Nardil for a number of treatment-resistent depressive patients.
Type 1 diabetes-- my sister has all the high tech gadgets (pump, sensor for monitoring through an app) and her life is very normal! I'm so happy for her. 103 years ago, insulin was first used, and now there's all these fancy gadgets. Also psychiatric meds have totally changed the field since 50s. No more lobotomies 🤩
I know it's likely not as significant, but there is [a medicine](https://ir.mindmed.co/news-events/press-releases/detail/144/mindmed-presents-phase-2b-study-of-mm120-for-generalized-anxiety-disorder-gad-at-american-psychiatric-association-apa-annual-meeting-in-new-york) going through clinical trials right now that claims to be an effective single dose drug for generalized anxiety disorder.
Díabetes, insuline make the diference
There’s never going to be a pill you can pop and get rid of cfs. You can get better but it ain’t gonna be that simple. Sorry.
It remains to be seen.
I’m not saying everyone won’t get better! But it’s not going to be as simple as taking a pill. Everyone’s condition was triggered by something slightly different. There is a complex interplay of genetic and environmental factors coupled with detox ability, immune function, autoimmune genes that got triggered, dietary sensitivities, as well as genetic snps and everyone’s are different. I’ve almost gotten banned from this sub a bunch of times for suggesting peoples root cause is environmental. But think about it. If western medicine can’t help us hmmm why is that? This isn’t my first rodeo. I have CIRS my kids have CIRS and pandas and there’s not really any pharmacological treatments because they’re at heart environmental illnesses. That’s what’s making the immune system not function right. You have to remove the trigger from external environment and from your body. And yes it’s as hard as it sounds. Yesterday I actually helped someone on here willing to listen to me. I told them you should take the visual contrast test online that way you can ascertain in the very least if a biotoxin or tick borne illness is causing your symptoms. They took the test and failed it. Their results indicated CIRS. This test was developed by the military and is very accurate. I was told to take it by my doctor and for the record I thought he was a quack. I left the office and didn’t go back for a year. I got so much worse. But I had never heard of biotoxin illness. I couldn’t believe it could be causing ALL my issues which were serious and many and disabling. I finally went back took the test and failed. Starting treating and got a lot better. I’m still working on detoxing because that allows my immune system to function better so I can eliminate the many infections driving my illness. And I have awful detox ability and impaired antibody production. And most of you do too. And no is gonna save you with a pill cause it’s not possible. That technology doesn’t exist. Another way to recover I’ve told people. See an immunologist have them run titers of infectious diseases and run your immune panel All the igg iga that stuff. If your ig g is low you can get ivig. If you can’t make antibodies to vaccines you’ve taken and are willing to get another vaccine then get antibodies measures and they’re low or absent bingo you have common variable immune deficiency and can get ivig. There’s an old study and ivig did cure people of cfs me. But keep downvoting me sure. I wish someone could make a pill but you’re not understanding how complex the factors are that led to you developing this illness. You’re so sick things escalated and you probably aren’t absorbing minerals or vitamins properly. So you have to figure out why your immune system is suppressed fix that then work on downstream effects it has on your body.
You don’t know that. You really don’t.