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I echo Ravn's comment. I spent many hours yesterday at cost to my health to provide detailed feedback. It feels like a kick in the teeth to have our efforts thrown back at us. If you don't want constructive and detailed feedback, that is your prerogative. I had hoped others would join in the...

The conjuction of these two parts of your comment is particularly interesting, highlighting, perhaps that you are unaware of the misuse of catastrophising questionnaires in ME/CFS that definitely has caused harm, as explained very well in this thread...

I had a quick skim through what these were about. Many are paywalled so we can't study them, most are about measuring patients' progress in stroke rehabilitation, clearly not relevant to us since there is no treatment leading to progress, or rehabilitation, in ME/CFS, and anyway the research was...

I am disappointed that our efforts to engage are seen as hysterical, hostile and insulting. We all want the same thing, better clinical care. If a few of us are forthright in our critiques, surely that is understandable given how appallingly we have been treated for decades, and it would be...

Blimey, so they stop the ME study at 17 pwME and plan on 240 pwLC. At the rate they did the ME study, that should take them another century or so to complete.

I agree. Why ask patients to spend 15 minutes filling in a lengthy questionnaire that tell the clinician nothing about what the patient can and cannot do and what triggers their PEM. The clinician isn't going to wade through pages of survey responses in such general terms with no specifics. It...

Have I understood correctly that Wallitt is in charge of a similar study with people with Long Covid? If so, one part of any complaints should be to insist he be removed from all further involvement with ME/CFS or LC.

So not in listening mode then. That is such a crass response.

I feel both gratitude to the people with ME/CFS who volunteered and underwent a gruelling set of tests, and sympathy with them for being badly misled by the NIH about the study. I don't think I would have volunteered to participate in this study if I had been told in advance that: part of...

My immediate reaction is how can it be used for 'clinical assessment' if the pwME is saying PEM follows very slight exertion, or very strenuous exertion or something in between without any indication of what that means to them at the time or to the clinician assessing them. To take an example...

Sarah Tyson has replied to my email: As the individual is the focus of this assessment, then the level of activity (mild, mod, severe etc) refers to whatever is mild/mod/strenuous for them. The fact that the amount of activity that others would consider in those categories is not relevant All...

Gupta has been selling this quackery for years. It's very like LP.

We've seen previous studies on this treatment. Epipharyngeal Abrasive Therapy (EAT) Has Potential as a Novel Method for Long COVID Treatment, 2022, Imai et al Autonomic Nervous System Regulation Effects of Epipharyngeal Abrasive Therapy for ME/CFS Associated With Chronic Epipharyngitis 2023...

I wasn't suggesting exertion intolerance/fatiguability are unique to ME/CFS. I was responding to the suggestion by @dave30th and others that the only thing stopping us exerting is anticipation that it might trigger later PEM. I experience both exertion intolerance and PEM. I agree they need to...

I disagree. See my previous post. Again, a problem, see my last post. We can't push through every task. Symptoms increase and debility increases during tasks, nothing to do with effort whatever or deconditioning. They need to recognise the effects of fatigability/exertion intolerance during and...

I'm with @rvallee on this. The stuff about effort preference makes no sense to me. I stop an activity because I can't keep doing it. I also try to pace by breaking up activities and resting between and avoiding activities I know from experience will be impossible or cause a crash, but the thing...

I have just sent the following feedback by email to Sarah Tyson: Typo spotted after sending corrected here in red.

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We have a very long thread on Paul Garner here: https://www.s4me.info/threads/paul-garner-on-long-covid-and-me-cfs-bmj-articles-and-other-media.15629/ I wouldn't class him as an ME/CFS researcher. I doubt he has ever been involved in any ME/CFS research, he's just jumped on the BPS bandwagon and...

Some who say they had ME/CFS and recovered like Parker and Landmark and Gupta have done or are doing really awful research on their versions (Lightning Process) of BPS nonsense which they claim cured them.