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?

Exactly this. They will just label it the 'lazy fucker gene'.

again, just craziness, there are no Fibromyalgia antibodies - If they existed, they would be used in a test for it, wouldn't they! And this only looked at mice response to heat and cold? No information here about how they judged how chilly a mouse was feeling, or why they associated that with fibromyalgia. People really need to be a bit more critical about what they read. This is research from a psychiatry ad psychology department? honestly, again, this might be useful research about.....something, but nothing here adds up to fibromyalgia being caused by antibodies- that is just the headline

Out of interest @starofsolomon, what’s your take on Parkinson’s Disease? Do you think that doesn’t exist?

don't be daft

But there’s no test for Parkinson’s? It’s diagnosed purely on symptoms, after excluding other conditions in exactly the same way as ME.

I don't know what you are trying to say here, there is no comparison between the two, and I don't know why you are saying there is, or that it is in any way relevant, I have completely lost the thread of what you even arguing. Are you arguing something? What is it? What relevance does parkinson's have to it, which is not similar in any way to anything else we have been talking about?

There are several tests for Parkinson's - a DaT scan looks at level of dopamine transporters in the brain - a normal result rules out PD. Cardiac MIBG scintigraphy is also used (less widely than DaT though).
Parkinson's disease has a very well characterised clinical syndrome - unlike FMG/CFS which is a pretty vague - and PD can be reliably diagnosed on brain pathology with a buildup of the alpha synuclein protein.

Totally agree. @AlannaOfTrebond

Someone shares some news that gives them a bit of validation and joy and... BAM, the mumsnet vampires come along and suck the fucking joy right out of the small victory that many of us feel.

@starofsolomon I'm calling you out as head vampire. Whilst I sympathise with your illness and the chronic fatigue you have suffered post cancer, please stop with the negativity. It would be unacceptable if this was a post about a cancer development and it's unacceptable on this post.

Honestly, this place makes me want to scream (if I had the energy 😂)

I apologise if I’m wrong. I’m just stating what it says on the NHS website, which is

“No tests can conclusively show that you have Parkinson's disease. Your doctor will base a diagnosis on your symptoms, medical history and a detailed physical examination.”

My point @starofsolomon is that nobody would ever deny the existence of Parkinson’s, or accuse sufferers of fakery. That would be ludicrous and inhumane.

Yet ME sufferers seem to be fair game? I’m interested in understanding why that is.

Thanks for posting. I have a family member with ME. They barely leave the house and we had to go to tribunal to get pip because no one understands or believes how much it affects them. Evidence is hard to get because beyond diagnosis there's no ongoing support so they seem to conclude 'it can't be that bad'

Parkinson’s has loads of definitive tests. Also genetic markers (that tell you if it’s the hereditary one or idiopathic).

Can we just agree that ME exists, as do malingerers?

I know a faker who uses ME to cover her dope addiction, and an ME sufferer who couldn’t walk for a year.

Absolutely this. And @starofsolomon I’m really unsure what you’re trying to achieve here. The OP has published a win for the cfs/me community and you seem hell bent on slamming it down, why?

Yes, it’s “just” a genetic marker, take it for what it is, but maybe have a little more compassion for the sufferers of this cruel disease for which this IS a win and a great way to redirect more research.

"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"

Yes it can be clearly diagnosed. I have MS and my many MRI scans show a progressive deterioration of the myelin sheath on my spine and lesions on my brain. My mobility is badly affected and the disease is progressive.

Can we just agree that ME exists, as do malingerers?

But this spectacularly misses the point which non-sufferers couldn’t understand.

By default, we are labelled malingerers. We genuine sufferers feel this really strongly. It is a grave injustice. So in order to prove people that we’re not lazy, or workshy, or just have a low pain threshold we end up pushing ourselves to do more than we are physically capable of, which is exactly what we are told NOT to do, and makes us even more ill.

We are damned if we do, and damned if we don’t.

Imagine we descended on a thread about cancer and said the same...

I sympathise but there are people who fake cancer so we really don't know who's real and who's not.

I'm sure if you eat better, exercise and just push through you'll feel better.

Nah, they're just lazy. I know someone who got PIP by just reading them the cancer symptoms off the internet.

Can we just agree that there are genuine cancer cases and malingerers.

COULD YOU IMAGINE... 🙄

Who left the bag of idiots open?

You must be a special type of moron to come onto a thread about ME and say that.

However, for rage bait I give you 10/10.

What’s your definition of ‘disabled’?

Under the Equality Act 2010, the defines a disabled person as someone with a physical or mental impairment that has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities.

Why should an ME sufferer not “badge” themselves as disabled if their ability to carry out normal day-to-day activities has been adversely affected by their condition?

Yeah, didn't want to quote the troll directly and give it satisfaction but these attitudes are exactly the problem.

1 Anyone with an illness needs 'validation,' firstly for treatment and second for accommodations and support. ME has nothing to do with laziness or being 'unable to cope with life,' it is a disabling illness, and to insult sufferers with no experience or information is inexcusable.

2 Deconditioning was debunked in the 80s. Healthy active people don't just start lying in bed for no reason, and that's very obviously not the cause of the illness, it's a symptom. 'Pushing through' is extremely dangerous for ME sufferers and causes their condition to deteriorate further, but they are often pressured to harm themselves by this ignorance, and not wanting to seem lazy or that they're 'not trying.'

Couldn't leave that response without chipping in!
Also, as someone who recovered from ME, I know that 'wanting to be ill' is nonsense. In no sense do people with ME enjoy being ill. It is not a pleasant illness.

Nobody fakes Parkinson's Disease.

This woman faked both illnesses. www.bbc.co.uk/news/uk-england-nottinghamshire-59527019?app-referrer=deep-link

This woman faked both illnesses. www.bbc.co.uk/news/uk-england-nottinghamshire-59527019?app-referrer=deep-link

So get it right up ye Locutus 😂😂

I am not "hell bent on slamming it down" - I am pointing out that the headline of the article, and the title of this thread are totally misleading, nothing of the sort has been found or proved. What is the point in lying about it? And passing on misunderstandings and misinformation? There is no "win for the cfs/me community" here, there is just a nothing.

Its not even "just a genetic marker" its a combination of 8. Honestly, I promise you you could find a combination of 8 genetic markers for anything at all. Supports ManU, prefers the left side of the bed, chose a green angel tattoo.

If there is anything at all of any value in this research, then it will come out, but as it stands, there is nothing, it has not even been published or reviewed. It is not "slamming it down" to point out that this is a non story.

Why do you want people to believe the misinformation and hype?

I'm re-quoting my own post just because i really hope people coming on the thread take the time to read the links . @R0ckandHardPlace it is indeed a rock and a hard place dealing with CFS !

Your ignorance is truly astounding, please at least attempt to educate yourself.