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?

I've known two people to genuinely have this, one dropped out of uni and one dropped out of school. There's no doubt in my mind that it exists and I think it's probably caused by having a virus beforehand in a similar way to long covid.

Then there's my lazy, attention seeking, hypochondriac cousin who got a diagnosis on the basis that they couldn't find anything else wrong with her. The minute she found out about fibromyalgia she decided she had that too. She likes to post a lot about it on SM but is fine to go on long haul holidays and being out all night when it suits her.

You know nothing about MEcfs. This is offensive. Chronic fatigue is not MEcfs. There is no 'actively working to recover ' unless you believe the snake oil salesman.

This whole thread is showing what people with MEcfs have to endure. People instantly talking about malingering and mental illness etc.

@R0ckandHardPlace it is good news and a good basis to direct further research.

The trouble is, malingerers exist, people who fabricate illness for attention exist. And they are going to be attracted to a certain type of illness, that can't be disproved, like CFS, like fibro. A certain percentage of people with this diagnosis will be fakes. That is a given. Personally, I would never assume I could judge who is and who isn't faking, but I know if I sympathise and support everyone in my life who tells me they have such a condition, then I am accepting that I am being deceived a certain percent of the time

I have chronic fatigue. In my case the diagnosis is "cancer related fatigue" but the symptoms are just the same as CFS - so I do sympathise with anyone struggling with this daily.

People like me were not included in this study. Maybe we should be included in future studies, as the mechanism that causes fatigue after cancer may be the same as the mechanism that causes fatigue after a virus.

Although, in cancer, more than in virus infection, there might be a significant psychological element

I have often wondered if it is an active immune system response, to prevent spread of cancer/infection by slowing the metabolism down.

But chronic fatigue as a symptom is not the same as MEcfs. That's why people with ME do not like it being called chronic fatigue syndrome. The fatigue is only one part of the illness.

It is possible to have MEcfs triggered after cancer though of course.

This study is a relief to pwme because it signifies physical cause. People have been 'treated' inappropriately and to their detriment in the past because of this being given weight as a psychological disorder.

People with MEcfs may feel depressed of course but that's likely a comorbidity due to feeling so ill and often unsupported all the time.

I'm sure people like this do exist but within a few posts we have people talking about it on a thread about good news for people like me I don't see this with cancer or arthritis or ms.

And I have known someone who faked cancer!

Any disabled person you see could be faking and may not need their crutches or wheelchair or badge. Weird to automatically assume you are being 'deceived a certain percent of the time.' Just because someone COULD be faking an illness doesn't mean they are.

Well, its hard to fake having breasts cut off and other scars from surgery with cancer, you can't fake going to chemo with a friend or family member, these things are really not so easily faked

Fantastic news.

As a sufferer of Hypermobility syndrome disorder which studies have shown links to an increase occurrence of other conditions which is disbelieved, I understand the importance of this.

But this is the whole issue, this article does not in any way signal a physical cause. Not in the slightest - no matter what the headline, and the title of this thread say. It is hugely misleading to say it does

Oh, they would. Don't ever think that they wouldn't.

While this is a positive step it doesn’t do anything to explain the underlying pathology that causes the ME symptoms. Genetic differences need to be linked to an identifiable physical effect in the body that leads to the symptoms. Such a finding would be the proof that so many ME sufferers have been longing for.

But there are genetic variants linked to depression, and to anxiety. I’d be surprised if there was a long term condition (except for ones with obvious physical cause like injury) that didn’t have a genetic element that made people more likely to develop it tbh.

I agree with the PP who made the general point that distinguishing between mental and physical illness doesn’t make much sense. Most people would agree that PTSD is a mental illness, but something like Parkinson’s is not. But why? They both involve physical changes in the brain and significant physical symptoms, and are treated with drugs which affect the chemicals in the brain.

Hi @starofsolomon here is the link to the news page of Decode ME (which is the worlds largest CFS/ME study), https://www.decodeme.org.uk/?utmsource=brevo&utmcampaign=Aug%202023%20newsletter&utmmedium=email I am a study participant and also an ex health professional with very long term CFS.The study is in preprint so yet to go through peer review and wider publication https://www.research.ed.ac.uk/en/publications/initial-findings-from-the-decodeme-genome-wide-association-study-tion https://www.decodeme.org.uk/initial-dna-results/ . It's not "proof" but what is it giving is a steer to further research ,as its an indication that there are signals pointing to people's immune/infection response and neurological systems ,and to similar found in those with chronic pain (so again, neurological components). its not going to change how I'm approaching recovery (which is possible and there's an awful lot of recovery advice out there on the internet now) but it fits in with my personal experience of the disease and that it has bio-psychosocial aspects so you can't view it solely through the medical model (or expect a defined "cure" its always going to be a combination of things). Definitely for me its been about improving my fight/flight/freeze response,(mindfullness!) and my gut health/immunity as it was triggered for me by repeated infections over many years since childhood. I had measles badly (as did a relative also with long term CFS) and measles has been shown to wipe immune system to an immature state https://www.sanger.ac.uk/news_item/measles-infection-wipes-our-immune-systems-memory-leaving-us-vulnerable-other-diseases/

You must admit though, the number of people claiming to have cancer is likely to be far fewer than those who claim to have fibromyalgia. One has a diagnosis, tests, treatment etc, one is diagnosed purely on the basis of described, non visible symptoms. One of our employee's other halves got her 'sign off' for DLA based on her partner describing her symptoms over the phone because she found it made her anxious to talk about it. He got the symptoms off the internet, because they didn't think her description sounded bad enough.

@starofsolomon interesting that you have cancer related fatigue, this was my specialism and part of my area of work prior to having to leave..there are multiple factors that will cause fatigue in cancer survivors but I have always been interested as chemo likewise has a "wiping your system" type of impact on the body, similar in some ways perhaps to the impact of measles. Cancer treament also involves a very stressful time over a long period with often multpile health interventions (other people i meet in CFS services also sometimes have this type of stress-plus -illness trigger, long covid is a classic for this) .

Having had very weird and debilitating neurological shit for 8 months post covid , I am no longer as sceptical about these kinds of things. I do wonder if a lot of them are virus triggered initially .

Yes - agree with this. You could literally just tell a doctor you're tired repeatedly and eventually get diagnosed.

I know that CFS is a real disease, but until there's a definitive way to diagnose, it is open to exploitation from people who aren't ill.

Scientists at, I think, Liverpool University have induced fibromyalgia in healthy mice by isolating and introducing it from human sufferers. Can't remember if it was in immune cells, proteins or antibodies, would need to find the research report.

There is no possible way of judging if a mouse has fibromyalgia! I dont believe this for a moment- very clearly false news!

This is my view too. I don’t doubt someone’s symptoms, I just think a ‘diagnosis’ named Chronic Fatigue is missing the point. Finding a gene that could cause these symptoms is a great start, but then what?

Similarly anyone diagnosed with Fibromyalgia - that just means muscle pain. I don’t want to be told I have a diagnosis of muscle pain, I want them to find out what’s causing it and how it can be helped.

These overarching labels for complex conditions are a band aid.

For doctors to actually listen and believe chronically ill women patients would be a start.

People suffering with Long Covid (post viral fatigue) are being studied and listened to. And yet those of us with post viral fatigue from other illnesses many years ago, must just be lazy/malingerers/hypochondriacs etc.

I really hope this study addresses ways to help people suffering with CFS/ME but it would be awesome if anyone with chronic pain and fatigue could be assisted by the health professionals tasked with caring for them, instead of being told it’s probably depression or anxiety.

But on the flip side many of us have demonstrable, physical symptoms like dysautomnia. Mine manifests as low BP (usually around 95/55 but drops on standing, resulting in faints. I generally can’t stand for more than 4 or 5 minutes without passing out), low pulse (50 bpm at rest, despite getting zero exercise), I never get a high temperature. Even when I was close to death in ICU with sepsis my temperature never went above 37. The glands in my neck, armpits and groin are always very swollen. My eyes are always bloodshot from a condition called epischleritis which is usually caused by autoimmune conditions.

Of course people can fake being tired or in pain, but the vast majority of us will have a long list of physical symptoms that can’t be faked. But because the lazy chav down the road is pretending to have our condition to claim benefits, we all get lumped into the same category.

I was so happy to see these results from DecodeME yesterday. Hopefully these results will encourage more research and give researchers an idea of areas to target.

This thread however has brought me crashing back down. Suggestions that I could be cured if I "worked through it", accusations that many sufferers are malingering. Many, many people with ME ended up this ill because they didn't give up and kept pushing through symptoms, which is the worst thing you can do with this hideous illness.

https://news-liverpool-ac-uk.cdn.ampproject.org/v/s/news.liverpool.ac.uk/2021/07/02/fibromyalgia-likely-the-result-of-autoimmune-problems-study-shows/amp/?amp_gsa=1&amp_js_v=a9&usqp=mq331AQIUAKwASCAAgM%3D#amp_tf=From%20%251%24s&aoh=17545606798537&referrer=https%3A%2F%2Fwww.google.com&ampshare=https%3A%2F%2Fnews.liverpool.ac.uk%2F2021%2F07%2F02%2Ffibromyalgia-likely-the-result-of-autoimmune-problems-study-shows%2F

I don't know much about Ms so sorry for my ignorance, but isn't MS a condition that can be clearly diagnosed/evidenced through scans etc of the brain? Whereas me /cfs is more of a diagnosis from ruling out other conditions like fibromyalgia.. Either way sorry you have to deal with that, I know someone with ms and they really suffer with it