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 have two family members with this debilitating condition. Thank you for flagging this up.

I had this awful illness for 4 years. My mum also had it in the 80s when it was dismissed as yuppie flu.
Anything to make it taken seriously is good.

I have M.E. Im not sure what this changes, people will continue not believing us because that's what suits them.

If evidence swayed them at all, they'd believe us already by observing and witnessing us. And the fact severely affected people die from it.

People are choosing to disbelieve us, I don't think this is going to change anything now.

Whilst its a positive step, I dont think it proves anything.

I was a part of this study. Its nice to see results coming out.

I am currently in remission but I have had bouts this year of just being so tired for a couple of days and then bouncing back.

It's good news but attitudes won't change overnight in the face of evidence like this.
I've not been keeping up with this, but is that ridiculous exercise protocol still being inflicted upon people?

It was only a matter of time. Hopefully there won't be the usual fight (as in other specialisms) to get tested.

This will hopefully help. There are always flatearthers but you just need a sensible majority.

I find it weird how slow the medical profession can be to accept change.

Presumably now they will be able to develop a blood test to look for these markers in order to provide a definitive diagnosis rather than just looking at a group of symptoms and giving them a name. I wonder if they can do the same for fibromyalgia?

I think long covid was instrumental in creating greater understanding around post viral syndromes outside of niche research areas.

A family member got Parkinson’s disease years ago she had previously been infected by a contaminated blood product with hepatitis. She was in a support group for people in the same situation and the level of Parkinson’s was astronomically high in the group.

It really seems like there is a link that the hepatitis triggered PD in members of the group, it is still dismissed out of hand even though many researchers have spoken to them over and again about sharing their suspicions that there is a link. The medical profession nope, nada.

I think the advent of covid triggering long covid has meant that dismissing any kinds of post viral conditions looks weaker and weaker.

Thank you, exactly this, I thought I was going mad for a moment, seeing posters latch onto this non-result as evidence of anything. There is nothing here. There is no information about anything at all. No, don't go and "offer a gilt-edged “Fck you” to the doubters, including my own GP?" *because you will just look illiterate.

This would be the ideal. Presumably this is now possible? Good news for genuine sufferers that the fakers can be rooted out!

No, of course it is not possible, can you not see, this is a nothing. A total nothing. There is nothing here. Talk about emporers new clothes!

I don’t think that’s on the cards right now. They’ve found genetic markers linked to the disease, ie that seem to predispose people to developing it. Having those markers isn’t a diagnostic tool to prove someone has the disease though, in the same way that BRCA1 mutations don’t mean someone has cancer, but they mean they are more likely to develop it.

It isn’t clear from the article whether all of the sufferers have a mutation or whether it’s just more likely, and also isn’t clear how many of the variants sufferers have (all of them? Is one enough?) or how that impacts things either. There’s still a long way to go for definitive diagnostic tests, but it’s a very positive step. It’ll be interesting to read the actual paper when it is published.

The discovery suggests that several variants of genes commonly found in the population raise the risk of developing the illness, though many people will carry the variants and never acquire it.

Did you actually read the article? It doesn’t say what you seem to think it does!

I’m pleased to read this but I think the issue is mostly that because there has been no blood test or scan used to routinely diagnose CFS the condition has been open to abuse by determined malingerers and therefore genuine sufferers can get lumped into that category.
Same thing happens with depression and anxiety and fibromyalgia.

I don't think that's possible yet. They have identified what makes people genetically more at risk. That's not the same as diagnosis. Sadly still a long way to go, I think

Was just coming on to say the same

exactly, there is nothing clear in the article AT ALL, and presumably not in the research either, although hard to tell from the writing,

It would only work if it was discovered it was somehow impossible to have it without these markers. So while not all people will develop it, only those with the markers would be diagnosed as having it.

This is excellent news. I despair of medics who decide an illness doesn't exist just because they don't know about it. And despair of anyone who thinks someone would choose to live like this out of sheer laziness.

I don't have ME or CFS. But I did have severe PVF after bad flu twelve years ago - way before Covid. It wrecked my life for three years - sleeping sixteen hours a day, having to give up work, barely functioning mentally, physically or emotionally for my young children as the brain fog was so bad it was like trying to walk through treacle to find a word or make a sandwich for DC's packed lunch. I have the deepest sympathy for anyone coping with this full time and hope you get the support you need.

I didn’t mean literally. But try living with severe, chronic pain for 35 years, and not being given pain relief. The results prove a physical cause. It is the start of something which can begin to establish a definitive ‘test’, and treatments. Maybe not a cure in our lifetime, but just to be heard and believed is life-changing. It is a very positive start.

My GP will only prescribe me one painkiller a day, which is half a single dose per day. If I had arthritis or a slipped disc or other painful condition they wouldn’t leave me in agony. The reason is that they believe I’m imagining it, and that makes me angry. They wouldn’t leave a dog to suffer like this.

Unfortunately, I think you’re on a hiding to nothing if you think that some genetic variants that many people have without ever developing ME will convince people who are unconvinced by debilitating symptoms.

I was told by my pain consultant a couple of years ago that there is a blood test for Fibromyalgia in the pipeline. I hope that happens soon! It's so frustrating feeling like you have to convince everyone your symptoms are real. Currently having an awful flare up and when I describe my symptoms to doctors they always say it sounds more like a virus or flu, yes it does because they have the same symptoms! I'm always found to be 'healthy' during a flare up, but I feel like I have the flu. My blood pressure is always low during a flare, my GP was able to see that physical symptom at least.

I know what it exactly what it means. This is the information shared by the researchers. There was also a good article on Channel 4 that explains it better.

https://www.decodeme.org.uk/initial-dna-results/?utm_source=brevo&utm_campaign=Aug%202023%20newsletter&utm_medium=email