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In the first years of my ME, even though I had had six years study and over ten years clinical experience in health related fields, I also had a range of poorly understood symptoms that did not fit simply into how medicine carved up our biology and/or our psychology. I was lucky my then GP and...

[Sorry this is a bit of a tangent, moderators feel free to delete] My onset was in my mid thirties, so it meant I had an education, my own home, a career and an established friendship group, which I think has left me in a better position than people who were younger at onset. Having a...

Thank you @Adam pwme for the subtitles.

Before the EBV infection (glandular fever/mono) associated with the onset of my ME I had had a number of other infections, from which I recovered readily. Over a number of years I believed I had recovered, but had a major relapse associated with an episode of presumed seasonal flue. Prior to...

The author seems to be confusing the ‘self reported/observed by others’ continuum with ‘objective versus subjective’ continuum, though lots of others, including the people she is critiquing do the same. Though these may over lap, it is possible to have self reported objective data and reported...

I don’t know if the active infection glandular fever (infectious mononucleosis) is specifically linked to kissing, but isn’t EBV itself so ubiquitous that even if no one ever kissed wouldn’t exposure to the virus be equally ubiquitous. Couldn’t it only be that kissing impacts the timing?

ZOONOSES ARE THE LEADING CAUSE OF MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME (ME/CFS). BASED ON THE RESULTS OF 322 BLOOD SMEARS MICROSCOPIES AND THE THERAPEUTIC RESPONSE TO ANTIMICROBIALS AGAINST THE IDENTIFIED PATHOGENS. January 2026 Authors : Gustavo Aguirre Chang, National University...

My undergraduate philosophy was half a century ago, and I struggle to remember details. I suspect @hallmarkOvME is much better placed to provide suggestions. All I am dragging for the recesses of my memory so far is Karl Popper’s “The Poverty of Historicism”, whereas something more general is...

To be contrary, to me the suggestion of the title “There aren’t any answers, we are looking for them and we will support you until we find them” still sounds the most impactful, though I recognise the ‘we’ would be a distraction without some long rigmarole to give context. I guess we this...

Surely everyone who is involved in the care and support of people with ME/CFS. However it is most important that clinical provision is based on this.

Seconded. Thinking back to the management of MND (ALS) in the 1980s and 1990s many medical services had problems arising from the lack of any curative treatment, however once services recognised the availability of management options including medical options there was a dramatic improvement in...

Given Central Sensitivity Syndrome is only defined as how people with symptoms, that the researchers believe is due to hypothesised central sensitivity, answer questionnaires, until there is some independent measure of the hypothesised brain activity/functioning we are left with a totally...

Below are summaries produced by Google AI, as I don’t see any need to go to the source material for this context, of the philosophical approaches that you, @hallmarkOvME, seem to think reduces our use of the term ‘pseudoscience’ to absurdity. We are using the term pragmatically as others have...

This thread highlights our lack of good epidemiological data in relation to ME/CFS. I think it is an interesting question as to what differences there are in recovery rates between adults and children, but we need better data to be certain that this is the case and to be able to quantify the...

I use the terms science and pseudoscience in the context of Popper’s idea that something that can not disproved is not science. So the idea that graded activity cures ME/CFS, but if it doesn’t or it makes people worse that means it still works but the patients didn’t do it properly, means under...

I continue ambivalent about asking for funding for more specialist ME/CFS or Long Covid services. Though we desperately need appropriate local services, especially for those who are severe and very severe, more of the same is likely to do more harm than good. Existing services are likely to be...

Thank you @MEMarge, I thought I had completed the survey but you quoting a section made me realise I hadn’t. Note, I have now.

There was a study some fifty years ago, which if I remember correctly looked at computer presented general psychiatric interviews that used quite a basic protocol of preset questions, responses to keywords in the answers and some echoing. The interviewees found the computer more empathetic and...

Not started to read the article yet, but I echo @Utsiktthat we desperately need more information and research relating to very severe ME/CFS.

This is of particular concern, given the problems that those with very severe ME/CFS and feeding problems have already getting appropriate medical management. If there is over diagnosis/misdiagnosis of gastroparesis it is going to make the life of those needing non-oral feeding even more of a...