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I have problems standing from sitting down or crouching, where the blood drains from my head and vision and cognition grey out. I can lose consciousness unless I lean over forwards. Takes about 30 secs for blood pressure to come back up. Severity of this varies, depends if I have been having...

A lot of people complain about similar. Hit me harder in the early years and took some getting used to and learning to dial down my reactions. Diagnosis helped a lot to know what I had so I could discount other theories and just calm down and sit it out. People talk about adrenalin highs and...

re OP, imho one potential lead is the claim from nanoneedle experiments and other sources that healthy cells in ME plasma become ME like and MEcells in normal plasma become normal. If this is replicable my suggestion would be to do fractionation experiments to discover the agents responsible...

The appropriate context being Milgram and a perspective on obedience and conformism, because people will say what they believe they are expected to say. Which is why empirical measurement data is a good basis for science and self reporting data is not. It is comparable to the problem of...

Do you think I should write about it @Trish ? Maybe I will blog it one day just for my own satisfaction. Hardly anyone ever reads my stuff though, I am not sure I would be doing the world a service. Yes I think that is what the nice lady was trying to say but of course she was wrong. Shows how...

I think placebo is potentially dangerous when trying to manage the reality of ME because it can prompt suppression and masking of significant symptoms leading to a failure to manage ME PEM and thereby cause crash and relapse. I speak from experience during 10 years undiagnosed when I was...

its frustrating, I think there is potential in the DecodeME data and the LSH&TM biobank data, if someone can work some AI magic with it while we wait though, my feeling about the aims of #ThereforME regarding the NHS is we gain no benefit in letting perfection become the enemy of the good and...

After ten years undiagnosed it took another fifteen for me to unravel the mess my mind had got into trying to cope with the affects of ME on my nervous system and the febrile affects of the constant push crash cycle. I had been living with delirium 24/7 trying to cope with the undiagnosed ME and...

@Karen Hargrave has just published a very moving piece on substack by Karen Galpin about caring for her daughter Sophia who has severe ME. Title - “This is not about not trying hard enough” A glimpse into daily life with very severe ME...

The question I am asking myself is how many of the 250k estimated prevalence have a solid ME diagnosis? It took me ten years to get an ME diagnosis. I got the impression NHS GPs were reluctant to diagnose ME. How many have been told to take it gently and wait and see? Or to try to get exercise...

Maybe he can help with AI interpretation of Decode ME data once it is released.

I see and what is the empirical test for "functional gastrointestinal disorder"? There is none. It is a diagnosis arrived at by failing to diagnose by known methods. It is not a diagnosis, just an unprovable hypothesis. Yet known methods are not infallible. It is likely there are conditions not...

#ThereForME has published its final advent calendar of 24+ ME supporting celebrities. I am deeply touched by their support and the work put into this and hope we can help raise the profile of this campaign a bit, somehow. Maybe hit the like button and restack if you are registered with substack...

Thanks @Dolphin that was just what I was looking for. I did write to my MP again and pointed her to Chris Pontings excellent piece in theconversation and the APPGs own report Rethinking ME.

Well its good of them and I expect those involved must be volunteers and might even have ME themselves so all is forgiven. I notice the chair and officers have changed since I wrote, I suppose that was a result of the meeting and new parliament. Might be a good excuse to write to my MP again...

I wrote to my MP Gen Kitchen (Wellingborough) and invited her to attend the Dec 17th APPG inaugural meeting. I am quite curious to know whether she did, is there any way to find out?

What struck me about the specialist services for ME discussion is it stands to reason they don't deserve to be considered specialist services for ME if they don't know enough to go to a severe ME patient rather than try to make her come to them in a hospital and cause the patient a relapse...

Is that Sarah Jane Mee? I don't watch Sky as a rule but I am very impressed with that piece of reporting. Hats off.

This just popped up in my YouTube feed, so it must be climbing the algorithm tree a bit, though I do watch ME vids of course. Naturally I liked and subscribed. Well done.

This rings a bell from a while ago considering it was published in 2020. Pol. J. Appl. Sci., 2020, 6, 50-5 I think they are summarising several experimental passes of divided stored samples at different times, otherwise I find it impossible to reconcile statements as follows. 26.6% is 8...