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ME/CFS research @cfsresearch.bsky.social · 07/10/2026

At least, that is what has been replicated.

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ME/CFS research @cfsresearch.bsky.social · 07/10/2026

I know it's biological. It seems to be a dysfunction in the stress system

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ME/CFS research @cfsresearch.bsky.social · 07/10/2026

For the study you mentioned you first need to check what has been replicated. And second look at the possible causes (e.g. stress causing EBV reactivation).

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ME/CFS research @cfsresearch.bsky.social · 07/10/2026

In terms of MECFS, it's not purely psychosomatic because viral infections (which are a common trigger) obviously aren't psychological. However psychological factors do seem to play a large role in the illness, as can be seen from replicated findings.

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ME/CFS research @cfsresearch.bsky.social · 07/10/2026

I wasn't saying MECFS is psychosomatic, I was just asking why psychosomatic isn't real. Psychosomatic means physical/real (that is the somatic part), e.g. increase in heart rate from stress.

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ME/CFS research @cfsresearch.bsky.social · 07/10/2026

But why do you think that psychosomatic isn't real?

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ME/CFS research @cfsresearch.bsky.social · 30/09/2026

And if you read patient stories, you'll see that stress is a common trigger (along with infections), and addressing that stress (including from the illness itself) is critical to recovery.

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ME/CFS research @cfsresearch.bsky.social · 30/09/2026

journals.sagepub.com/doi/10.3233/... Other replicated findings include CBT and GET as treatments, and dysregulation of the stress system (HPA axis / ANS).

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ME/CFS research @cfsresearch.bsky.social · 30/09/2026

The evidence does seem to show that stress is a key factor, as do patient reports. That is one of the few replicated findings.

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ME/CFS research @cfsresearch.bsky.social · 29/09/2026

Placebo is stress reduction. If the problem is stress (as with MECFS), then it can help. That isn't the case with cancer.

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Tom Plender @tomplender.bsky.social · 28/09/2026

1/ conversion disorder and deconditioning/illness beliefs model have been a simplistic disaster, ME/CFS should be under neuro immunology, not the pseudoscientific dustbin of 'psychogenic illness' - www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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ME/CFS research @cfsresearch.bsky.social · 28/09/2026

What if the treatment is the placebo effect though?

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ME/CFS research @cfsresearch.bsky.social · 28/09/2026

Here is a report of someone who recovered in the placebo arm of the LDN trial: www.reddit.com/r/cfsrecover...

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From the cfsrecovery community on Reddit

Explore this post and more from the cfsrecovery community

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ME/CFS research @cfsresearch.bsky.social · 25/09/2026

I wasn't stressed either after I developed MECFS either, or when I developed it (during xmas holidays). It seems to be more about dysfunction of the stress system. The stress typically comes in the 6 months prior to onset, either as a viral infection or life stress (or commonly both).

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ME/CFS research @cfsresearch.bsky.social · 25/09/2026

Pacing is just a part of it, but the main part is stress reduction and addressing nervous system dysregulation, which is different from pacing. Pacing is reducing activity, whereas addressing ANS dysregulation requires reducing stress and then increasing non-stressful activity. The latter seems to

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ME/CFS research @cfsresearch.bsky.social · 24/09/2026

Nobody said that. I'm just pointing out that recovery is possible, that management/treatment involves psychosocial interventions. Generally these improve functioning, and they can lead to recovery. Patients should have balanced and factual information.

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ME/CFS research @cfsresearch.bsky.social · 24/09/2026

You might want to look at their position paper which clarifies this bacme.info/wp-content/u...

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ME/CFS research @cfsresearch.bsky.social · 24/09/2026

Except it's not just my story. It's the story of the many thousands of patients who have recovered, as well as those who haven't yet recovered, and the patients that George talked to: who have gotten worse through inappropriate treatment and stress.

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ME/CFS research @cfsresearch.bsky.social · 24/09/2026

given the entire story. I've no interest in manipulating anyone. I'm fully recovered and living a healthy happy life now. I spend some of my spare time helping other patients who aren't so fortunate.

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ME/CFS research @cfsresearch.bsky.social · 24/09/2026

I'll take that as a no then. I'm a recovered patient, and there are 3000+ stories published from myself and others which are consistent with the evidence and the BACME treatment guidelines. I'd urge both you and George to look at that evidence and also talk to recovered patients. You're not being

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ME/CFS research @cfsresearch.bsky.social · 24/09/2026

They do seem to be. Have you talked to recovered patients and looked at the evidence?

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ME/CFS research @cfsresearch.bsky.social · 24/09/2026

Pretty skewed and unhelpful article, as usual.

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ME/CFS research @cfsresearch.bsky.social · 21/09/2026

Many of us have recovered using appropriate psychosocial treatments. Perhaps you should look into what helps patients.

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

posts and my blog if you're interested.

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

The comment was "people with ME do not recover", and that is demonstrably false based on the lived experience of those who have recovered. I'm aware people haven't recovered, and that is why I spend so much time helping those patients. I do share many peer reviewed studies, as you can see on m

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

All I can say is that you're 100% wrong, as our lived experience shows that we can recover. It's a shame there is so much misinformation.

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

Instead, what seems to work is addressing stress and nervous system dysregulation, and gradual safe increase in activity, as per BACME's treatment guidelines. bacme.info/wp-content/u...

bacme.info

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

Yes, I'm aware that graded exercise can cause worsening. It's not recommended any more, and I don't know anyone who recovered using GET. That's not what I'm suggesting at all.

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

The recognition of these and other relevant cognitions in CFS has led to an increased understanding of the condition using a cognitive behavioural model."

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

An association between poor outcomes and the attribution of CFS to a physical cause has been shown in a number of studies [10,13,31] and having little sense of control over the symptoms has also been associated with a poor prognosis [19].

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

Psychiatric disorder was associated with poorer outcomes. Importantly, the evidence does suggest that irrespective of the biology of CFS, patients’ beliefs and attributions about the illness are intricately linked with the clinical presentation, the type of help sought and prognosis [4].

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

And that Hotopf review you cite gives 5% for untreated CFS. With treatment or secondary care they found the recovery rate was 22-24%. They also say that "Predictors of an improved outcome included less fatigue severity at baseline and not attributing the illness to physical causes.

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

That's the difference between MS and ME though. In ME there doesn't seem to be any identified disease process, other than dysregulation of the stress system, and patients can indeed fully recover.

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

Yes, I've experienced ME with PEM and recovered from it. There isn't any evidence of tissue hypoxia.

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

I was talking about ME, NOT chronic fatigue! People with ME do indeed recover fully. I have, and there are 3000+ recovery stories of others (not to mention the many who haven't bothered publishing their story). The continued misinformation about recovery is one of the factors holding people back,

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

But there can, as so many of us have recovered using broadly similar approaches, and now don't have PEM any more.

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

Sure, but we already have rehab studies and reports from thousands of recovered patients pointing towards a strategy that seems to work for most, so we just need to have one or two good trials to validate it. We can do other studies too, but that seems the most urgent, and the lowest hanging fruit.

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ME/CFS research @cfsresearch.bsky.social · 20/09/2026

I think there are more pressing studies to fund, such as a good rehab trial.

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ME/CFS Science @mecfsscience.org · 20/09/2026

1) The team of Andreas Goebel was the first to transfer autoantibodies of fibromyalgia patients to mice (similar studies later followed in Long Covid). In this paper, they tested rozanolixizumas: a drug that lowers circulating antibody levels. A brief summary of the results 👇

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ME/CFS Science @mecfsscience.org · 18/09/2026

1) A genetic analysis of the UK Biobank found 7 ME/CFS hits that were replicated in another cohort such as the All of Us cohort. One signal matched with expression of the gene CLYBL in the putamen brain region. But there are many caveats. None replicated in DecodeME.

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ME/CFS research @cfsresearch.bsky.social · 17/09/2026

But some of those theories do have replicated evidence backing them up, e.g. HPA axis dysregulation and psychosocial factors. Also, bedbound patients are obviously deconditioned. While not the primary cause, it can potentially be a perpetuating factor.

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ME/CFS Science @mecfsscience.org · 17/09/2026

1) The pharma company BioVie announced the results of the phase 2 trial of their drug Bezisterim for Long Covid. Although the primary analysis showed no significant effect, an analysis in subgroups with a great symptom burden suggested an improvement. A brief breakdown 👇

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Jon Stone @jonstoneneuro.bsky.social · 13/09/2026

Scamvougeras and Castle express the view that FND should be framed ONLY in psychiatric terms in a new article @CogNPsychiatry zurl.co/pSx1u My reply explains why I think this historical - and dualistic - approach is wrong: zurl.co/OAcPN

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ME/CFS Science @mecfsscience.org · 14/09/2026

1) There's a new consensus statement on ME/CFS diagnosis and assessment by 19 experts. The table below shows some of the objective tests they recommend for various symptom domains including a standing test, polysomnography, actigraphy, CPET, NK cytotoxicity, etc.

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Chris Ponting @cgatist.bsky.social · 14/09/2026

📢 New ME/CFS genetics preprint from the Beentjes/ Khamseh/ Ponting groups NB: Not DecodeME We discover 7 genetic associations to ME/CFS that are independently replicated in UK Biobank and/or All of Us ME/CFS case/control status required multiple lines of evidence www.medrxiv.org/content/10.6...

ME/CFS cases (or controls) were defined using multiple lines of evidence in 2 independent UK Biobank cohorts, and 1 independent All of Us cohort. We needed to restrict genetic ancestry to Europeans to minimise the chance of spurious associations. Next, we used TarGene to estimate the effects of genetic variants on ME/CFS risk. Finally, we replicated 7 variants that were both significant in a Discovery GWAS, and in one of two Replication GWAS.

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ME/CFS Science @mecfsscience.org · 11/09/2026

1) This study found that ME/CFS patients often have too low blood and low red blood cell volume. But surprisingly, these measures weren't related to orthostatic intolerance as measured by a lean test. This suggest that hypovolemia isn't the main reason for orthostatic problems.

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