ME/CFS is finally proven to be a real illness

[R0ckandHardPlace]

Yesterday the findings of the biggest study to date of ME/CFS were published. The DNA of 15,500 ME/CFS sufferers was compared to over 250,000 controls. The researchers found 8 specific genetic differences between groups, which all backed up the symptoms reported by sufferers.

For years we have been told that it is all in our heads, that we can ‘exercise’ our way out of this awful disease; people (including some medical professionals) have disbelieved us and judged us as lazy hypochondriacs.

Today is a good day for the ME/CFS community. At last our voices have been heard, and hopefully this will pave the way to more research and better treatment.

https://www.theguardian.com/society/2025/aug/06/genes-me-chronic-fatigue-syndrome

So AIBU to offer a gilt-edged “F*ck you” to the doubters, including my own GP?

Please, for the love of all that's holy and the wee donkey, please go away.

You've made your point. Please do not return.

No need to apologise. You’re right, MS can be proven with physical tests. There why I said I’ve got lots of evidence! But that doesn't stop people disbelieving me. They just make up their own minds by eyeballing me in that moment. So if I, with all my evidence, can be considered just being lazy, I am not sure a diagnosis for ME is going to stop that side of it.

@R0ckandHardPlace can I ask Are you able to go weeks like a “normal “ person say doing things day at 100% then you are wiped out or is it clean the house then nothing for weeks? For example

???

Ive got CF. 2 years now. Still can’t walk further than about 12 paces. Of course I’m fucking disabled! It’s hateful

Re: long covid, yes there are hundreds of thousands of studies on covid, many many showing the impacts on the body of even asymptomatic infections. As someone who has long covid, I can tell you there’s not much actual help, not much (in my experience, nothing) from these studies has filtered down to health services or treatments. This includes being coaxed and pushed during a long covid research project - it’s like they think excessive pushing might just require a little snooze when we get home.

All we hear is covid is mild, despite the millions just in England suffering with it - we even tell people to knowingly spread it, which is all shades of fucked up considering what it already known.

We also have the “let’s take the mickey out of your life being destroyed” vultures descending with comments such as long Covid isn’t real - it’s especially galling seeing it done to parents of some pretty ill kids, begging for a glimpse of light.

It’s fine, ME was solved on here a while back. A prescription of jacket potatoes with tuna if I remember correctly, and you’ll be fit as a fiddle and ready for a full time job.

I'll start by saying that I'm not trying to be provocative, or insulting. I'm really not. But this is a really complicated subject and bad faith actors really aren't helping your cause.

I worked as a medical claims assessor for around 17 years. The vast, vast majority of our incapacity claims were for CFS or fibromylagia. In the early years CFS dominated and then over time, we saw a shift to fibromyalgia and the CFS claims dropping off.

I have two very close friends who have CFS. And they are genuinely and legitimately disabled by it. So I come from a place of believing that it's a real condition, just like fibromylagia.

But the problem you have is complex.

Firstly, if someone is going to fake an illness, they're going to pick something like CFS or fibromyalgia. We caught many, many claimants faking their CFS or fibro - but it required private investigators and video evidence to prove it. That wouldn't have been cost-effective so the smaller claims just got accepted and never investigated, even if they looked dubious.

Secondly, we saw quite a lot of claimants who had a history of anxiety and depression. Some of them absolutely refused to accept that there could even be a smidgeon of anxiety/depression etc influencing how they felt. As PP have said, there seems to be a steadfast insistence that it must be a physical cause even when there is evidence to suggest MH may be a factor. There shouldn't be any shame in acknowledging that MH is contributing to physical conditions but people seem to think that admitting that means they are making things up.

Just to reiterate what I said upthread. CFS is undoubtedly real and causes horrible disability. I remember going to a seminar years ago where a consultant talked about studies that showed an increase in lactic acid.

But:

Some people who claim to have CFS are perfectly well. They either never had it or else recovered and have lied about it.

Some people with a diagnosis of CFS clearly have mental health difficulties too. No idea which came first, but there's typically a history of anxiety/depression. Refusing to acknowledge this really doesn't help with credibility.

Not everyone with CFS will fall into the above groups, but some will - and therein lies the problem.

I've assessed literally thousands of claims over the years, and CFS and fibro made up a large bulk of these. They are both debilitating and awful conditions, and anyone who is suffering from either has my absolute sympathy. It's so hard when you don't know how, when, or if, you'll get better. And being caught in a vicious circle makes it harder - no energy to exercise but by not exercising, muscles atrophy and it's harder/more exhausting. Absolute bastard.

If you genuinely have CFS/fibro, one of your biggest problems is that you probably don't realise how many scammers there are out there. And your debilitating condition is the thing they often claim to have. It makes people suspicious of anyone with CFS/fibro, even though that's not fair.

I understand the desire to grasp onto any shred of "proof" but I don't think this study is what you're hoping it is. Maybe with further research it will be, but I don't think it's at that point yet.

@Welliesandtweed
i find your opinion very patronising.
I have been through plenty of stressful events in my life and “pushed through” as you put it. I have had multiple physical health problems as well and I “pushed through them”
I have me/cfs and fibromyalgia and it is nothing like being stressed or recovering normally from an illness. I am an educated person who had a happy life then it all changed.
What possible reason would I have for suddenly deciding I’ll just stop in bed all day now. I don’t have low resilience, I have tried things to improve my situation. I didn’t have a complete personality transplant and suddenly decide to give up everything I love so I could be disabled.
i wish people could have more empathy and kindness.
The only way I can describe it is being ill, not tired, not stressed but so exhausted I can’t move, having zero energy and being in constant pain, tinnitus, dry eyes, sensitive to noise and light the list goes on.
”pushing through” makes me worse so what should I do? To have a diagnosis of ME you have to have post exertion malaise, where doing anything makes u worse. That’s anything physical or mental. I’m absolutely exhausted but cant sleep, not sleeping makes pain worse then that keeps me awake, viscous circle.
The strength it takes just to get through the day you wouldn’t understand but I’m judged as weak.
Would you give up ur whole life to live like this? No joy, just relentless pain and prejudice from people?
But I keep going for the times i feel slightly better and for my family.
im stronger than you think

ME has been known to be a genuine neurological illness since 1969, which is when the world health organisation classed it as a neurological condition. There have been many previous studies show in neurological and immunological abnormalities in ME sufferers. The NHS knows full well it is real which is why they don't allow people with ME to donate blood. The reasons people try to pretend it isn't real are purely ideological. Unfortunately I don't think this study will change anything 😢

I've been diagnosed 12 years & was diagnosed with Fibromyalgia 21 years ago after nearly dying giving birth to ds. Hopefully the discovery will mean that patients will have a clear treatment protocol in the future instead of being treated like lab rats with here try this & see if it works & being medically gaslighted that what they are suffering is all in their head.

No one recovers from Parkinson’s disease, it is a progressive, degenerative neurological condition.

And you cannot compare it with ME/CFS.

Yes you can. Both are very serious illnesses that cause immense suffering. In fact ME has one of the lowest qualities of life of any illness. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

I was comparing them only in as much as both illnesses are diagnosed based on symptoms but only one is believed. ME can be just as disabling as Parkinson’s, but there is no treatment for ME.

It can be even more disabling in its severe forms.

No, my condition does fluctuate. At my very best, I worked full-time and on the weekend I’d clean the house and do the shopping, but I never had a social life. Every calorie of energy was reserved for vital tasks. Every spare hour was spent sleeping. But I still felt really tired and achy all the time.

At my worst I was bedridden for two years (this was at the beginning of my illness).

The past few years I’m in between. I can’t work, even part-time. I’m in constant severe pain. But I get up and have a shower in the morning (I have a shower stool) and come downstairs. But that usually wipes me out for the day. On a good day I can potter a little bit, like get myself a glass of water or wipe down a worktop. My husband does all the cooking, cleaning and laundry. He’s my carer and he’s amazing.

For me, I guess it’s like having flu. Where every part of your body hurts and every step feels like you’re walking through water, and you just want to lie down on the floor and go to sleep.

But these days I’m much happier. I hit menopause and stopped caring about people’s opinions of me. I’ve never claimed any benefits because I was so scared of being labelled a scrounger, but now DH has had to stop working to look after me I’m going to claim PIP, because I genuinely qualify for it and I can no longer afford my physio.

I find this concerning, because why did you think such a high number were scammers?! What did they do that made you think they were faking or weren’t ill enough?

I have anxiety and depression on my medical history. As a PP said, you don’t just have a personality transplant one day. I went to the doctor with frightening symptoms and was told it was anxiety - that’s on my record. It doesn’t say POTS, previously assumed to be anxiety. When I was saying to another doctor that I didn’t know what else I could give up to stop the crashes and deterioration - it had already taken my job, ability to parent, exercise, hobbies etc and said sometimes I have to push through despite knowing it’s going to lead to a crash e.g. coming to the appointment. He offered me a discount scheme at a gym. When WTF tears came to my eyes, he offered me antidepressants.

I find comments like yours quite frightening and it’s one of the reasons I don’t want to risk my baseline further by applying - for that I blame our system of which assessors are a part, because irrespective of the number of scammers, it sounds like a horrific process to get a tiny bit of help and one that will damage what’s left of my baseline even further.

I don’t “think” they were scammers, I KNOW they were. And the only reason I know is that we obtained reports from private investigators, including video evidence.

It’s a very hard condition to assess because it fluctuates. And everyone is allowed to have good days. Having good days doesn’t mean you’re a scammer.

But for example, telling a medical examiner that you are too exhausted to walk and turning up for the exam in a wheelchair. Then leaving the exam in the wheelchair saying you’d have to go and lie down for the afternoon as attending the exam wiped you out. However what you actually did is drive to a shopping mall and spend the next few hours cheerfully strolling around without a wheelchair.

Or the claimant who filled in a diary saying they were lying in bed but on the day they said they were too exhausted to even go and make breakfast, they were out jogging.

Or the claimant who said they were barely managing their personal care and was more or less housebound, but actually was working full-time in the local pub.

All real examples. I could give you many more.

Genuine claimants really do have no idea the extent to which people lie. As I said in my post, CFS and fibro are genuine and many people suffer horribly. Unfortunately it’s these types of conditions that are much easier to fake because it’s largely self-reported symptoms. So if someone wants to commit fraud, they are more likely to say they have one on these conditions.

That’s not the same thing as saying everyone with CFS is a scammer. I’m not saying that at all. I’m saying people with CFS suffer because their illness is used by scammers.

I have anxiety, horrible bastard anxiety that has plagued me since my teens. It’s nothing to be ashamed of.

I’m sorry you find my comment frightening. That wasn’t my intention nor is there any need. All assessors know there are many genuine claimants who have fibro or CFS. It’s just unfortunate that a minority commit fraud.

The reason that I commented is because people with CFS are really affected by public perception, unfairly so. I wanted to provide some honest context why that’s the case. I reiterated in my last post and I will do again now, there are many genuine claimants and CFS is real. But because there are some blaggers who lie, it means that everyone is often viewed with cynicism.

But @SpidersAreShitheads why do you feel the need to say all of this? We know some people make up illnesses. But you wouldn't jump on a cancer thread and tell all those sufferers about someone you know who faked it, would you? So why is ME fair game? I'm frankly sick of it and I have no idea what you're trying to bring to the conversation.
The study results feel like a lifeline because this illness has been ignored for so long. It shows that somebody, somewhere, actually cares. And that's a nice change.

It took me about a decade to get a diagnosis, but all I hear is how easy it is to get diagnosed with someone you can't see in a blood test. I'd love to know which doctors these malingerers are seeing, because mine were intent on telling me there was nothing wrong because my bloods were fine, despite so many debilitating symptoms.

People used to get labelled with hysteria for some cancers.
I had no idea until recent years how little had been spent on research for ME, how little treatment, some of the barbaric things that have happened such as putting kid into a pool to see if he’d swim, children that have been told it’s in their heads, small accommodations that hospitals refuse to make, the lack of specialist knowledge, the people who have died. I wonder how much starts at a basic level. Years ago, one of my modules was on health psychology - lots about what stress can do to the body and the benefits to some of being ill, but absolutely nothing on the impact of living with severely debilitating illness and nothing on the stress caused by using what little resources people have to try to access help from health professionals and being denied.

There’s something akin to “just need to check you’re not crying rape” to a rape survivor, in much of how people with ME seem to have been treated. I should imagine the stats are similar. It makes living with such an horrendous condition even harder. What possible reason is there to suggest a reduced gym membership to someone who misses exercise, unless you didn’t believe them? What analysis had my doctor done on depression before offering anti depressants to me? Why jump to anxiety instead of also considering things like POTS, especially as I mentioned having had a recent covid infection? Why are the medical profession so ignorant about PEM? Why when I say I’m feeling sick and dizzy and struggling with a sit to stand test do they keep pestering until you vomit? People are continually proving themselves and met with disbelief. The sheer relief from some on here about “see, it is real” is heartbreaking and a lot of people should be ashamed and want to do better, except they won’t. They’ll continue to harm.

How many column inches on how people are playing the system vs column inches on those not able to access the support they are meant to be able to access? It’s inversely proportionate to the amount of fraud.

@Ribbityalan hear hear!!

The reason I say all of this is because it's difficult for some people to understand exactly why CFS sufferers get such a hard time. Just look at the comments on this thread.

I have been very clear and explicit that CFS is real and debilitating.

I'm autistic and every week on here there's a thread going on about how neurodivergence is all bollocks and how diagnosis is fake, so it's not as if I don't understand your position.

But I have a quite unusual insight into fraudulent claims, because that was my job. I dealt with the dodgy claimants for many, many years. And I can tell you that's CFS is often the claimed disability (or fibro) for people who are trying to run a scam.

If anything, I'm actually backing you up.

What I'm saying is that because your condition is hard to diagnose, it's targeted by people who want to try and scam the system. And I'm saying that it's really unfair for anyone who is genuinely disabled and struggling - of which there are many.

The reason I mention it is to provide context for the people that are pissed off at the scepticism. As an honest person, you probably have no idea that others lie so voraciously. Even though I'd seen fraudulent claims many times before, it never failed to shock me.

You can be as outraged as you want but what "I'm bringing to the conversation" are facts about why you get unfair treatment, and facts about why so many people are cynical about your symptoms. I'm not saying you are fraudulent, I'm saying that fraudulent people appropriate your illness and your symptoms, and that's why you face such unfair scepticism.

Pretty appalled you'd compare CFS to cancer, if I'm honest. But if you want to go there, no, we never had a fraudulent cancer claim. That's because doctors aren't making their decision based on self-reported symptoms. There are objective scan results. However, I also co-run an online community group and quite a few years ago now (pre-COVID) there was a lovely member who had terminal cancer. She had very little and it was going to be her last Christmas. We organised a huge (secret) fundraiser for her and literally a couple of days before the delivery was due to take place we had a tipoff. Turns out she was a massive fraudster - we had to get the police involved. It's a very long story! But on that occasion, her self reporting of the cancer, photos of being in hospital etc were complete dupes. I didn't ask her for scan reports because I wasn't assessing a claim. We just believed her because who wouldn't?! There really are some shameless people out there.

I hope that this research leads to something tangible for CFS because it will really help combat the scepticism that's out there. There will always be fraudulent claims, but having objective evidence will help pinpoint them, will reduce general cynism for the genuine folk.

I'm not attacking you, I'm supporting you. I'm trying to explain how your condition is exploited by fraudulent people, and how that unfairly impacts on public perception - and that includes some medics.

I understand, but it does get very tiring when we can't talk about ME without someone bringing up the fact that a lot of people fake it. It's something we hear all the time, and it makes us feel that we are being judged by their metric and that we are not really believed either. I'd like to be believed regardless, I want to be believed now BEFORE there is a test.

I bring up cancer because I think it's important to realise how different illnesses are treated differently. There seem to be a different set of rules with how people interact with almost every single other illness compared to ME or fibro. It's unfair, when ME has a devastating impact on quality of life. Im just trying to illustrate that it would be nice, for once, to just be believed the way people who suffer from other illnesses are.

Im also autistic so I see where you're coming from but I dont think what you are talking about is really appropriate here.

I'd love a test to be created. It would solve most of these issues. The fraudsters would be exposed and we would be taken seriously (in an ideal world, anyway).

I've kept away from this thread because the comments took something that was meant to be a positive for us to something draining and negative.

There have been studies done on quality of life of people with MEcfs v 'big' diseases like MS and Cancer so it is not unreasonable to discuss this in terms of support and research funding and quality of life and outcomes. The money that has gone into MEcfs is miniscule.
https://www.healthrising.org/blog/2015/08/05/chronic-fatigue-syndrome-worse-mulitple-sclerosis-cancer/

As for the mental health aspects, George Monbiot has written very eloquently about Mecfs and the impact of discredited studies and 'treatments' from psychotherapists with vested interests. The nice guidelines were updated ages ago but many GPS still mention graded exercise therapy and CBT as treatments. People with MEcfs are understandably concerned about having this recognised as a physiological not psychosomatic illness.

https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services

@SpidersAreShitheads Where did you work? I'm sorry but what you say really doesn't ring true to me or reflect the experiences of people I know with those illnesses. One of my sisters has severe ME that is very much real and has devastated her life, and her claim on her critical illnesses/ TPD cover was refused because they didn't even recognise the condition. It really doesn't seem likely to me that there are companies throwing money at anyone who claims to have it. I just don't think that's true.