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My first ill informed thought was, to quote Alexander Pope: A little learning is a dangerous thing ; Drink deep, or taste not the Pierian spring : There shallow draughts intoxicate the brain, And drinking largely sobers us again.

The site says:

From the Covid Institute web site

‘Exercise’ tends to be used for physical activity that is undertaken for its own sake, whereas ‘activity’ is a broader umbrella term. So all exercise is activity but not all activity is exercise. Interventions tend to focus on ‘exercise’ which can be measured and done in clinical settings but...

A very useful piece.

In contrast I get the problem of pain in my toes from warmth. It is most frequent getting into a hot bath, when my toes register the heat as pain, when the rest of my body just registers it as heat. Less commonly I have the same experience of going from the cold into a warm room where the pain...

I am assuming you are interested in people with the relevant data participating from any where in the world, but it might be worth making that more explicit. I suspect it is probably too late for this project, but we do fairly often prove advice on how researchers draft their material so that...

Welcome @Rachelsmallfry, you will find a lot of interest here in genetics and there are quite a number of relevant threads you might want to look at, especially in relation to specific locations raised as of interest by the DecodeME study. Several members here were actively involved in that...

I had always assumed that originally sleep being ‘unrefreshing’ in the sense that it does not resolve the ME/CFS fatigue was what was intended in the symptom list, to distinguish from fatigue due to just not getting enough sleep. I doubt may compilers of symptom lists ever engaged in the sort of...

I added the caveat ‘in general’ in my mind when I responded to the poll, as (as always) with ME ‘it varies’ or ‘it depends’. Occasionally I wake up feeling refreshed, though not very often, more frequently I have disrupted sleep so my nights are ‘unrefreshing’ because of disrupted and/or...

I would be willing to post link s to the weekly updates to the Facebook page, though I couldn’t guarantee to do more on the Facebook page consistently.

It is not necessarily a problem, but I have just noticed we have stopped posting to the S4ME Facebook feed rather posts are going to @Tom Kindlon ME/CFS page. It may be this is a better option as Tom will have more followers.

Any researcher looking to send me to a spa hotel on a Greek island along with a valet and a chauffeur as part of validating this suggestion is most welcome to contact me directly.

Though I understand that the body did not evolve requiring frequent baths or showers, I do get psoriasis on my face and scalp which gets worse if I don’t wash. I find it is best managed by regular hypoallergenic face wash and moisturiser, but that not washing for weeks on end results in sore and...

I found this difficult to answer as in the thirty years of my ME I have probably experienced every possible variation in sleep patterns. I eventually decided on ‘occasionally’. I have had periods of hypersomnia, sleeping sixteen or more hours in a twenty four hour period. This has only occurred...

A very interesting proposal, @Elara Grey. Albeit several decades ago now, I have worked a lot with people with neurodegenerative conditions, and this approach makes sense to me for ME/CFS too. Would it be worth having a thread to specifically discuss this? We have previously discussed whether...

To be fair, early on in the course of my ME I would have benefited from an explanation of PEM, permission to do less and someone to talk through how to reduce my activity levels. Who would be best to do this is more of an open question. This is probably something different people have different...

For some years I have experienced a runny nose on waking in the morning or shortly after getting up. Usually it clears after blowing my nose a couple of times. Very occasionally I also get it after sleeping in the middle of the day. I don’t usually get it when waking in the middle of the night...

At my worst, having a bath triggered much worse PEM than a shower, I assumed this was temperature related as it was easier to create a tolerable shower temperature than a sustainable temperature for bathing, though being upright was problematic meaning I was showering once a month or less...

I wonder if some confusion arose, @mariovitali , because you were raising issues in part tangential to this thread, so I was wondering if it would be worth starting a specific thread(s) on what you see as the key issue(s) involved. (I could not see any relevant existing threads, but I do...