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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

ME/CFS is finally proven to be a real illness

129 replies

R0ckandHardPlace · 07/08/2025 07:22

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?

Scientists find link between genes and ME/chronic fatigue syndrome

Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness

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

OP posts:
R0ckandHardPlace · 11/08/2025 23:26

@TimePresent I think @SpidersAreShitheads is a PIP assessor, working for the DWP.

OP posts:
Azdcgbjml · 11/08/2025 23:50

SpidersAreShitheads · 11/08/2025 15:58

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.

My dc's ME consultant compared it to cancer. In terms of impact on your life he said it is comparable. Why do you find the comparison so shocking?

Azdcgbjml · 12/08/2025 00:20

The reason why referring to ME as a psychological disorder is infuriating is because there is a long history of people with ME being told they just need to change the way they think. That has set back research by years! There is (outside of the genetic study we're currently discussing) evidence that it is physiological. What is desperately needed is a) a definitive test and b) some effective treatment.

The NICE guidelines changed away from CBT and GET because it wasnt working. In some cases it was doing harm.

For people who don't have lived experience, themselves or watching a loved one, it is very hard to understand just how debilitating and frightening it is. I watched my fit, healthy, active teenager, who had no signs of poor mental health, hit a brick wall. At its worst, before we understood what it was and how to manage it, when we were trying to encourage school attendance and "pushing through" there were days of lying in bed, unable to speak, unable to eat, needing support to get to the bathroom.

The not eating is the scariest thing. That's how people end up dead.

Now we know how to manage it, there are days of getting up, getting something to eat, having normal conversations, maybe even playing on the computer. There are also days of not getting up. Needing to eat in bed. But at least for the most part there is eating which feels like a big win!

Some references for those interested...

1 Arnold DL et al. Excessive intracellular acidosis of skeletal muscle on exercise in a patient with a post viral exhaustion/fatigue syndrome.
The Lancet, 323, 1367 - 1369

www.thelancet.com/journals/lancet/article/PIIS0140-6736(84)91871-3/fulltext

2 Behan WM et al. Mitochondrial abnormalities in the postviral fatigue syndrome. Acta Neuropathol 1991, 83, 61-65.

link.springer.com/article/10.1007/BF00294431

3 Syed AM et al. Mitochondrial Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Physiology (Bethesda). 2025 Jul 1;40(4):0.

4 Shepherd C. Is ME a neurological disease? The ME Association, 2020
meassociation.org.uk/wp-content/uploads/2025/02/NEUROLOGICAL-IS-MECFS-NEUROLOGICAL-DISEASE-FEB-2020.pdf

  1. Komaroff T et al. Causes of symptoms and symptom persistence in long Covid and myalgic encephalomyelitis/chronic fatigue syndrome. Cell Reports Medicine, 2025, Volume 0, Issue 0, 102259

www.sciencedirect.com/science/article/pii/S2666379125003325

BrambleyCrumble · 12/08/2025 03:13

R0ckandHardPlace · 07/08/2025 11:19

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.

My mum has Parkinsons.

Parkinsons is not a diagnosis of exclusion (will explain more below)

And Parkinson's is not diagnosed purely on symptoms (ie what a person feels and experiences). It is diagnosed on symptoms and signs (signs = objectively observable).

Please do not take this to mean I am dismissive of hidden/invisible illness, because I'm not. I understand the challenges in getting people to take ME seriously, and it is horrendous. But I am frustrated that you are using Parkinson's to argue your point about ME, without understanding of what Parkinson's is.

Parkinson's is not a diagnosis of exclusion. It is diagnosed clinically. A consultant neurologist carries out a physical / clinical exam of the patient. The signs and symptoms are consistently observable within the clinical setting, eg intention tremor, rigidity, handwriting size, and in more advanced cases, a characteristic masked facial expression, quiet voice

These are symptoms shared by a group of disorders known as Parkinsonisms. Parkinson's Disease is the most common type of Parkinsonism. Other forms include (but are not limited to) drug induced Parkinsonism (especially amphetamines), also strokes and Lewy Body Dementia.

The neurologist is usually able to determine with good certainty which Parkinsonism the person is experiencing. This is because of differences in onset, presentation, and medical history. Scans may be done if there are concerns that the cause of the parkinsonism is eg dementia, but in most cases they are not needed. Where scans are done, they are used alongside clinical examination and medical history. Medication response is a key factor. That is what the NHS info means when it states "there is no one test". There are a number of tests, scans and examinations which can be used concurrently and collectively to inform diagnosis.

So in terms of Parkinson's diagnostic procedures being comparable to diagnosing ME. It's like comparing apples and oranges.

With Parkinson's Disease: Patient sees GP about symptoms. Characteristic signs (eg tremor, rigidity) are objectively visible to GP. Consequently, GP refers directly to neurology. Neurologist carries out clinical exam and possibly (but not always) imaging. There may sometimes be a period of watchful waiting, but usually this is not the case. The Neurologist makes diagnosis regarding the type of Parkinsonism (Parkinson's Disease being the most common).

This very different to ME, wherein a patient might see a GP about often invisible symptoms (I use the word invisible to mean hidden, not in a pejorative sense), and the GP starts lengthy process of blood tests to rule out anemia, infections, malignancies, etc, then after multiple appointments refers to multiple / different disciplines such as immunologist, neurologists, rheumatologists, each if whom has their own diagnostic processes, over a timeframe of often many years.

Parkinson's is simply not a diagnosis of exclusion in the same way, and it is not diagnosed purely on symptoms.

As to questions on this thread as to whether Parkinson's is categorised as physical or mental health. It is classified as neurological, and, where psychiatric symptoms are present, it is neuropsychiatric.

I agree with you that ME should be viewed as seriously as other debilitating conditions. However (and I am sure you did not intend this) i find your comments around Parkinson's problematic, because whilst you are (rightly) frustrated and angry that others are ignorant about ME, you yourself do not appear well-informed about Parkinson's, but use it to further your discussion of ME.

If anyone is interested in learning more about Parkinson's Disease, it is well worth visiting the Michael J Fox Foundation, or Parkinsons UK

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