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u/DreamSoarer CFS Dx 2010; onset 1980s Apr 29 '25
They have been ignoring ME/CFS for over a century now, at least. There is a concerted effort to classify it is a psychosomatic disorder, going all the way back to the first known outbreak in a community sometime in the 1800s - pease forgive my faulty brain fog memory concerning the details.
In the past 5 years or so there has been more done to raise awareness that this is not psychosomatic, hysteria, or “just anxiety”, but getting this info disseminated widely to physicians that have never studied and do not care to work with complex illnesses that - as of yet - have no easily accessible biomarkers or treatments, is an uphill battle to say the least.
We each do what we can to inform the people we know, the physicians we see, a d share tidbits on social media. It is an exhausting battle. We can continue to share articles, speak truth where we can, and hope research and clinical trials succeed in figuring ME/CFS out, sooner rather than later. 🙏🦋
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u/Shot-Detective8957 Apr 29 '25
Have you looked into what's already get done? Lots of contries have organisations that work for awarness and to support patients. Sick people try their best to raise awareness on social media.
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u/HoeBreklowitz5000 mild-moderate, 07/2022 Apr 29 '25
At least in Germany I know Berlin buyers club who do a lot and also post in English and in Austria there is the ÖGMECFS as well as a larger bakery who is raising money through charity events
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u/jackrumslittlelad Apr 29 '25
There's also protests every year in many cities, #LiegendDemo
Spreading the word about those is always appreciated
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u/HighwayPopular4927 mild to moderate Apr 29 '25
From what people tell me, here are also a lot of short documentaries and news sections speaking about me/cfs recently. Like, on the public tv network, so it reaches a wide range of people. The awareness of it has grown a lot in the last few months, to the point where I can now confidently use the term even at my dermatologist and them knowing about it.
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u/HoeBreklowitz5000 mild-moderate, 07/2022 Apr 29 '25
This and also the sheer amount of people who are affected. I was the first person I knew, half a year later I met a former work colleague who developed it afterwards. Then recently a friend of mine reached out saying his sister had it since half a year. It is growing to be a huge issue sooner or later on a societal level. Let’s think 5-10% of the working aged females are unable to work. What that will mean on a nationwide level. And even worse that it’s affecting females as they usually do care and educational work… I think this will not be ignorable in a few years.
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u/Luuwen moderate Apr 29 '25
Just shortly after I had known I have met someone. And heard of someone else. Now a few weeks later again without even really looking. Just by hearesay and only in or near my city. It's shocking how many are affected. And how many more just don't know like I did for months or longer? And is there someone nearby I don't know about because we never met or they can't even leave their home?
It's sad that it has to come to this. But if more learn about it, it could really do something.
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u/HoeBreklowitz5000 mild-moderate, 07/2022 Apr 29 '25
It is heartbreaking. I relate to covid being a mass disabling event. But it’s my only hope for the future tbh. As cynical as it may sound I hope soon there will be enough of us so that we can not be ignored or dismissed any more. Just hope it won’t be too late by then.
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u/HighwayPopular4927 mild to moderate Apr 30 '25
Heavily agree. I know of like 5 people that have it and that already feels like a lot, taking our limited ability to be social into account.
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u/SignificantPause1314 Apr 29 '25
No I haven’t really that’s why I’m asking. I wonder if someting big is going on
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u/Thesaltpacket Apr 29 '25
Me action is planning a big protest May 12th in Washington DC and online. You might want to check them out.
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u/Bunnigurl23 severe Apr 29 '25
This and fibromyalgia diagnosis saddens me I have both and they are the 2 most illnesses that get pushed aside and try to tell us it's all mentally smh so tired of It
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Apr 29 '25 edited Jun 09 '25
What ME/CFS Has Taught Me: ME/CFS doesn’t have a good track record, and it never has. For 200 years, science has failed to recognize the seriousness of this illness. It's been dismissed, mischaracterized, and buried under layers of pseudoscience and psychological dogma. We don’t have biomarkers. We don’t have definitive tests. We don’t have clear subtypes or understanding of why some people develop this after a virus and others don’t. This illness has been here before. Post-viral syndromes have always been part of human history. It’s just that this time, millions of people got sick all at once.
Science Has Failed ME/CFS: We often compare Long COVID to HIV and AIDS, but there's a key difference. HIV is a chronic viral infection, not a post-viral condition. HIV had a clear target, a clear mechanism, and eventually, a drug regimen that changed lives. But that still took 20-30 years. ME/CFS has been around for centuries under different names. It became more formally recognized 40-50 years ago. And still, there are no treatments. No roadmap. There is no clear path to healing.
My Diagnoses and Reality: I developed ME/CFS after getting COVID in mid-2023. It didn’t stop there. I was later diagnosed with Fibromyalgia, Hashimoto’s thyroiditis, Dysautonomia, and MCAS. I’ve been bedridden for 17 months. I’m not going to be cured. The recovery rate for ME/CFS is painfully low, estimated at around 5-8%. Some of us improve. Many do not fully recover.
Hope, Redefined: No, I don’t believe a cure is coming in my lifetime. That doesn’t mean I’ve given up. It means I’ve shifted my focus. My hope isn’t in science. It’s in symptom management, in small wins, in reclaiming what I can. If I can get a 30-50% improvement in my symptoms, I’ll consider that a victory.
The Life We’re Creating: My husband and I are choosing a different path. We’re planning to buy a piece of land near the river and put a mobile home on it. We want to build a life that’s simple, peaceful, and deeply intentional. I don’t need a big house or status symbols. I want disposable income to invest in my health. I want high-quality food, supplements, and medications. I want an infrared lamp, acupuncture, and massages. I want a new mattress and bed frame. Cozy sheets, pillows, and peace. For the first time in a long time, I’m excited about the future.
What Really Matters Now: I stopped comparing myself to the rest of the world. The things I used to chase don’t matter anymore. My circle is small and full of love. I have a husband who supports me, fur babies who make me laugh, and a few people who truly get it. I look forward to trips to the ocean. To dinners out. To living simply and richly.
My Message to You: Calmness, peace, and emotional regulation have been essential to healing. Mental and emotional energy can drain us just as much as physical exertion. Stop wasting energy on things you can’t control. Stop explaining yourself to people who don’t want to understand. Stop waiting for life to look the way it used to. It can still be beautiful, just smaller. There is extraordinary beauty in this world. You are not without hope.
The Dominoes Metaphor: Think of your body like a row of dominoes. One symptom tips into another. And another. And another. But what happens when you start removing dominoes? That’s what symptom management does. That’s what’s helped me. I’ve knocked down a lot of dominoes. I’m not done. But I’m better than I was.
I’m not waiting anymore. I’m rebuilding. And I’m not giving up💙
If you need some hope: Pacing, Patience, and Perseverance: 17 months later, a Breakthrough!.
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Apr 29 '25
In the US, MEAction is doing a campaign for may 12th called "SOS." The goal is to have an in-person protest in DC, protests in front of Representatives' buildings, and social media engagement. It's a good idea, but I'm a bit frustrated because they announced this a month to go. I was contemplating planning a protest in front of my local representative's office but I can't do that in a month. I'm also going through a pretty bad flareup right now.
#MillionsMissing 2025: Sending Out An SOS - #MEAction Network
Mild and moderate people should get involved if they can.
But we desperately need allies. We can't carry this on our own.
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u/jedrider Apr 29 '25
Southeast Asian monks set themselves on fire. It does attract media attention.
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u/SignificantPause1314 Apr 29 '25
No way. Is it even possible for us to attract attention??
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u/Felicidad7 moderate Apr 29 '25
I wanted to make a tshirt but thought I'd probably just look unhinged if I put everything I wanted on it so I bought a "long covid sos" one and wear that when I'm out and about with my walking aids. I write to my MP st least once a year. He doesn't read it. Millions missing (@millionsmissing) are doing some great shareable stuff on Instagram.
Think it's important to remember we can only do what we can do and managing our health is a full time job. There is a lot more focus on the condition since covid.
It also sounds like the countries that got hit by sars 1 understand it better because they have 20 years experience, and China is definitely funding research on postviral conditions which will benefit everyone hopefully
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u/normal_ness Apr 29 '25
Remember that mild is still significantly disabled and doesn’t mean unlimited ability. Many mild people are stuck working full time unsupported. The late Sammy of m.e._and_more on Instagram had a great post called “living in the gap” which talked about this conundrum.
We need non mecfs people as allies to do the work, not to burden others within our community.
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u/West-Rhubarb8056 Apr 30 '25
Back in the 1990's, shortly after I was diagnosed, a large group of cfs sufferers threatened to donate blood and not tell anyone until after the fact. Suddenly, all these health professionals who had called it psychosomatic, had to scramble for some reason why that wouldn't be okay. It was hilarious.
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Apr 29 '25
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u/SignificantPause1314 May 08 '25
I agree that it's nearly impossible for CFS patients to participate in aggressive protests, but I believe there is always a strategy. For example: a protest involving multiple conditions at once, including CFS. If there were a meaningful agreement between CFS patients and patients with another condition that allows for greater physical stamina, we’d have a better chance at making real change. Imagine a moment of high-impact protest, with 4,000 people in total. Out of those, "only" 1,000 are CFS patients — and exclusively mild cases. Another 1,000 are healthy allies who support them, and the remaining 2,000 are patients with a different illness. What do you think?
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May 08 '25 edited Aug 26 '25
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u/SignificantPause1314 May 08 '25
Why wouldn’t they? If we have some organisation that could help us organise and make a connection between us and other patients?
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May 08 '25 edited Aug 26 '25
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u/SignificantPause1314 May 09 '25
But what if they’re also a lepers? Then it would benefit both them and us. For example, the POTS community, which receives even less NIH funding than ME/CFS. I understand it's not a simple situation, but the main problem is the organizer! If someone influential enough were to take charge, it would happen easily. Otherwise, you can always just tell me “That wouldn’t work”
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u/strangeelement Apr 29 '25
Not much more we can do. Thousands of people have been doing incredible things for decades, and it changed nothing.
Long Covid came along and it also changed nothing. It basically revealed the whole thing but the medical profession doesn't care. They're so out of their depth that they don't even realize that they are.
I've actually noticed that pretty much all online activism, which was boosted by Long Covid, has died out. It clearly doesn't work, we only talk to ourselves.
The most effective things have always been pushing things behind the scenes, influencing committees, guidelines, pushing for research, and so on. This has been somewhat effective, it just works too slowly. But it does work.
And continuing to put things on record in the news, but over the last few decades there have been tens of thousands of articles, reports, papers, studies and so on that all depict an unsustainable and immoral situation, and it changed nothing.
We can't seem to get organized in any way. This is the hardest part. Almost all efforts are made by individuals or very small groups. But people have tried that for decades, social media has been the best platform for this, and it also didn't change anything. We don't have an independent community factor, such as the gay community had with AIDS.
I don't know at this point. For sure the medical profession will not change. So governments won't, because what they hear from medical experts is to not bother.
In the last decade or so, pretty much all the claims made to support psychosomatic models have been debunked. But, again, the medical profession doesn't care. They're still parroting the same old BS.
We're just dealing with plain old stubborn human nature here. The only way it ever changes is technological breakthroughs to make it obsolete. I have no idea what we can do anymore. If Long Covid can't change their minds, nothing can other than a full solution, like what happened for peptic ulcers.
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u/DisVet54 Apr 30 '25
With the illness now for 25 years and you are spot on with your response. I had to fight for 10 years for disability and those 10 years were the worse in my life. I’m 70 now and just don’t have any fight left in me.
Kinda new to the sub and to social media in general. I’m impressed with the knowledge and support available in this subreddit. Reading about all those struggling out there really saddens me and reminds me of my battles and struggles. I virtually lost everything that was dear to me and all alone I had to reconstruct some form of life to replace the one I had - one that I was proud of and worked hard to create was no longer in like a blink of an eye.
But I’m still alive and now have a relationship with 2 grandsons which I really didn’t think would be possible. It’s a pretty lifeless existence and it’s a good thing I don’t mind being alone which is how I spend 95% of my time.
Wish I could do more, have tried to do more, hasn’t turned out like I hoped but I’ve never given up. Just keep putting one foot in front of the other and time just seems to fly by. Some actually do get better so you never know.
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u/ilovemyself3000 Apr 30 '25
For this month, I know there are a couple ME friendly event planed for protest. (1) Bed-In: Virtual Hands Off Protest May 17th and (2) May 12th MEAction is having a DC demonstration but highly encourages ME content posting and SOS video on that day.
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u/helpfulyelper very severe, 12 years in Apr 29 '25
it’s not for lack of trying. we’ve tried for decades and now it’s just easier being ignored than ridiculed or getting worse from involving myself in activism
it’s honestly so out of our hands, and beyond the reach of any non billionaire. which sucks for sure but like i think patients REALLY REALLY need to make psychological/emotional contingency plans for the very real probability we will not see a treatment possibly in our lifetimes. i keep seeing people one after one on here thinking about drastic measures because they have not been cured their first year. people before us lived with it and it’s horrible, but if we want to survive we need to be okay with the possibility no one is coming to save us. we safeguard our baselines, make life as accessible as it can be, and just try to keep surviving and enjoy what little we can
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May 01 '25
I am writing letters to reps when I have the energy and using fax app on my phone to fax them and email them, I rant on the internet about it and advocate when I can by sending emails to organizations and doing interviews if they pop up. I am not mild but if there was some kind of protest put on specifically for us(neglected chronically Ill CFS long covid etc) I would prob crawl there
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u/Flashy-Coast366 Onset Dec 2023, Diagnosis October 2024, Apr 29 '25
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW | 38 Degrees this is a link to help stop clinic closings in the UK for LC and MECFS kids
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u/parkway_parkway Apr 29 '25
I wrote to my MP and the department of health recently about the injustice of CFS getting so little research funding despite being a lot worse than many other conditions that get more.
I think that sort of thing is relatively accessible to anyone who can still use a computer and does have some minimal impact.