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I thought that in the cases of a well-adapted chronic infection the illness is significantly less severe than ME/CFS. And in cases where it gets as severe as ME/CFS it is usually a process that causes visible damage or makes patients progressively worse over time. EDIT: so the fact that ME/CFS...

For me, a characteristic feature of ME/CFS is that it can keep patients tremendously ill for decades without showing abnormalities in standard medical testing and, in many cases, without making patients progressively worse over time or causing some form of detectable degeneration in the brain...

Don't know. Would be useful if others could give some examples of illnesses caused by chronic viral infections. I keep thinking of STI's and hepatitis. Are there chronic illnesses caused by chronic viral infections that look like ME/CFS?

Sorry to hear that. I had the impression that those who get progressively worse form a subgroup and not the majority but it is difficult to say because we have little good data on prognosis.

Are there any good examples of chronic illnesses caused by chronic viral infections? I can only think of AIDS where patients eventually become sicker and sicker until they die (in case of no treatment). Although there are exceptions, for the majority of ME/CFS patients it doesn't seem the...

As usual, I received support from S4ME members who provided feedback and fact-checked before I submitted the comment. Many thanks, really appreciate the help!

I also submitted a letter to the editor. The submitted version is available here: https://www.researchgate.net/publication/351934191_A_high_drop-out_rate_of_cognitive_behavioural_therapy_for_chronic_fatigue_-_a_comment_on_Adamson_et_al I had hoped that by focusing on specific questions, the...

We have written a short blog post about the long-term follow-up findings of the GETSET trial and its implications. After years of waiting, the long-term follow-up results of the GETSET study have finally been published. The control group that received no intervention did just as well as the...

There was a big Q-fever outbreak in the Netherlands and a Giardiasis outbreak in Norway which were investigated. In both cases there was an increased incidence of ME/CFS or ME/CFS-like symptoms.

There are some additional references in the 2018 S4ME thread: https://www.s4me.info/threads/who-said-80-of-me-is-post-infectious.7320/#post-130742

Not really a large or representative sample, but I think the paper by Chu includes some data and a discussion on this: Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - PubMed (nih.gov)

It would be interesting to have feedback from other patient communities. If you know anyone in other patient communities feel free to ask them their view or opinion. We try to read up on each illness that we write about but it's soo much material that we probably cannot grasp all the complexities.

It's in the back of our mind but that would be a long-term project that will take a lot of effort. We are first going to proceed with posting these blog posts and then see afterward if there is enough material to start thinking about a book.

New blog post where we explore the myth of the schizophrenogenic mother. Today schizophrenia is regarded as a brain disease but several decades ago, psychosomatic explanations were in vogue. The psychotic delusions of the great mathematician John Nash, for example, were blamed on fetus envy...

The main issue I have with the tryptophan trap hypothesis is that thus far there doesn't seem to be a reason to think it has anything to do with ME/CFS. So if they have data suggesting this IDO2 mutation is more common in ME/CFS patients that would be a first step. If they publish these...

It looks like they are going to recruit through ME/CFS patients organisations and ME/CFS clinicians so the results are probably going to be biased in that way. In my view, looking at symptom clustering or overlap with a survey also isn't very reliable to understand a relationship between...

One a more positive note: it may be that diagnosis of POTS, MCAS, hEDS, ME/CFS, fibromyalgia, chronic lyme diagnoses all depends not so much on the patient's symptoms but on the doctors they have access to. In that case, it makes sense to group them together and look at the clinical...

I'm concerned for conclusions such as 'hEDS patients and ME/CFS show high symptoms overlap so perhaps they are related or the same illness' or 'POTS patients show a lot of gut issues just like MCAS patients suggesting a shared pathology, something to look into further' etc etc... Because of...

To be frank it's these type of conclusions that I'm concerned about. I think these difference will likely be affected by random statistical noise, unrepresentative recruiting into the study, and biases of the clinicians who give these diagnoses because they think these are valid and useful...

Yes, but if they are recruiting through ME/CFS patient organisations and clinicians then any data obtained in this way is likely to be misleading. And even if a representative sample is obtained, I'm afraid symptom overlap is unlikely to give useful clues about POTS, MCAS, hEDS etc. It all...