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A UK article, in today’s Independent, on this topic, see “Boris Johnson’s Covid plan puts 500,000 ‘forgotten victims’ at risk, charities warn ‘There is no end in sight’: Immune-suppresed face anxiety as restrictions lifted”...

Obviously here in the UK we have the prospect of mask wearing becoming totally optional and in the near future the dropping of quarantine for those testing positive with Covid being a legal requirement. Recently I had two instances of people I know ignoring social distancing: one someone...

Thank you for pursuing this exercise. The layout is much clearer than the trial run and I think separating out severe and very severe in the last question is a good move. I still have a problem responding in relation to an image that is a poor representation of ME in general but could still be...

I was perhaps being pernickety, but I interpreted your statement as intending a general principle that B12 should never be supplemented if current levels are within normal levels, whereas there is the exception if you have good reason to anticipate supplementation is necessary to prevent the...

If there is an ongoing issue with low B12 surely there is an argument for maintenance dosages to keep levels within normal limits.

Sorry I struggle with remembering acronyms and abbreviations, so if anyone else struggles like me LDN stands for ‘low dosage naltrexone’. When I was searching for LDN I came across this article relating to its use in fibromyalgia: “The use of low-dose naltrexone (LDN) as a novel...

You could find someone who already has a cure or set a team of scientists working on the right track in this time scale.

Though it might currently be of interest to test for mycotoxins, I agree with our present knowledge it makes no sense making that a basis of treatment, for example I have noticed that the vast majority of adults with ME are more than four feet tall, but I would not suggest shortening their legs...

Though this study is not looking at ME as a specified condition, it can not be ruled out that ‘stimulants’ used long term could have harmful effect for people with ME. If you accept that in ME by definition over exertion can result in a short term negative reaction (PEM) and also potentially a...

ideological cultist, propagandist, BPS cult activist

Have you seen that @PhysiosforME are currently collecting people’s experiences of this? See https://www.physiosforme.com/post/vagus-nerve-stimulation-survey-recruiting-now?fbclid=IwAR1aL4x-u2FA7jj_-poEw2XgOhAEDZ13wfowGKxadFECKYHGP6ReKvFOXlA (Added - Also there are quite a few threads here...

From MEpedia Nancy G. Klimas, MD, is an American researcher and physician who is the Director at the Institute for Neuro Immune Medicine at Nova Southeastern University in Miami and Ft. Lauderdale, Florida. She is, also: Director of Clinical Immunology Research, Miami VAMC; Professor of...

I am confused by this abstract. Are they using ‘central/centralised’ in two different senses? I am interpreting the phrase ‘the central role of pain’ as relating to the subject significance or importance of pain in their lives, however when they talk about ‘centralised pain’ are they mailing a...

For me my gluten?wheat issues have changed over time. Initially I thought might have had a wheat intolerance rather than a gluten intolerance, as I could eat rye bread, though spelt, which some people with wheat issues can tolerate, behaved for me just like modern wheat varieties. For a number...

Without having read the paper the curves seem to indicate a belief in a discrete disease or illness process that happens for a fixed period of time and then it’s real life implications disappear over time. This ignores the possibility of further active disease/illness process(es) continuing or...

There is a caveat at the bottom of the page linked too But I am concerned that this is nowhere near prominent or clear enough, as such activity involving a fixed amount of exercise everyday regardless, is potentially the worst approach to activity someone with ME could take. Further it is...

I have been on a gluten free diet for some fifteen years (non coeliac gluten intolerance possibly linked to my ME), but have seen a significant deterioration in my orthostatic intolerance over the last eight years. Though there may possibly be an association between gluten in our diet and...

It is important to distinguish between a questionnaire as a psychometric tool designed to measure specific psychological traits and a questionnaire designed to elicit information about an individual or a group of people. I suspect in reality such as the Calder scale is the later, misused as the...

I wonder if part of the root of this, is the idea that if validated the actual questions in a psychometric tool are irrelevant. The idea that once validated it ceases to be a questionnaire and rather an objective measuring tool. As an undergraduate, some forty years ago, I was taught that once...

This is also a preselected sample, people referred to a specialist service for CBT which could have implications for interpreting the results.