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I have a similar problem but I don't know if it is the same as I have rashes, and dry, broken and bleeding skin. It is worsened by many toiletries, cleaning products and creams, including Aveeno which was recommended by the dermatologist. I now use Sanex toiletries only, avoid touching any...

Perfusion, perfusion, perfusion ... IMO poor perfusion is the key to understanding the symptoms of ME. All (or most) physiological processes work normally, but are under-resourced because of poor perfusion. (I hope to write this up properly at some point).

Yes, but I'm not very active on Twitter.

He is coming across as reasonable and listening, but making ME guidelines look like a matter of opinion and debate, rather than evidence. Possibly also trying to collect some negative responses to use for the 'patient activist' narrative.

On the face of it, the Sunday Times article is the author’s work in which he expresses his personal opinion with the best intentions. I see instead a carefully crafted article with a very familiar narrative of beleaguered good doctors, who only want the best for their patients. I suspect it is...

How many patients say they have done the activities prescribed when they have not (because they can't or because it makes them feel worse), and say they feel better when they do not?

By abuse, I meant that if I were an unscrupulous researcher I could complete the survey as if I was a patient or carer and submit questions that suggested my field of research was desired by patients and carers. If I had a large number of collaborators and supporters, they could do the same...

Thank you @MEMarge

I've added another question: Can we have more research into pain and its physiological correlates in ME patients, particularly in association with activity? My experience is that every physical and some mental activity incurs pain and while it is both pain and fatigue combined that generally...

I remember that at the time Flegal's paper was published. The criticism was astonishing. I've since realised that a false narrative for obesity is promoted in the same way as that for ME. There is no doubt in my mind that they are similar. I can see a political motivation for it (neoliberalism)...

In the absence of a biomarker, we can only define remission on the basis of symptoms, and since PEM is the hallmark symptom, a total remission would require the absence of PEM. May I suggest that on that basis, when you were 90% but still had PEM, you were in "partial remission", or not in...

Here are my questions in full: 1. Is ME best understood as a form of cardiac dysfunction? It is clear from the widespread symptoms that the disease involves systemic impairment. Can systemic hypoperfusion of tissues explain many or all of the symptoms of ME? If a pathogen or toxin which damages...

These are my questions and comments: I have grouped my questions into 7 main questions. There is space for three questions and one comment on the form, but I understand from @MEMarge we can make more than one submission, so I will make three submissions. My main questions are: Is ME best...

Thank you. I considered "deterioration" and "exacerbation" but I'm not sure that they are appropriate either. The term "escalation" was used in relation to COVID-19 in an article I read recently. I think I might look into the terms used for other diseases.

Thank you for your definition. I'm sorry to hear about your relapse. May I ask if you were taking immune modulators for ME or another condition?

Can you define relapse? I assume it is preceded by a recovery or remission. I experienced gradual worsening over several years then a sudden worsening after an event. Relapse does not seem the appropriate word, but I don't know how else to describe it.

My experience was the opposite. I thought the onset was gradual, as I was gradually getting worse with time. Only after diagnosis did I realise it started with an acute viral infection-type illness (sore throat, fever, headache, cough, aches and pains etc). At the time I didn't connect the...

I know exactly what you mean and there is no easy answer. I found it very difficult to cope with not working and I had many dreams about work. In the end, I stumbled on a science research project that I have been working on independently for 15 years which stopped the dreams. Occasionally if I...

Surely it should be called COVID-19. Recognition of the long term effects in some patients should not depend on giving it another name. If you have stroke, you don't give it a different name according to whether you died instantly, recovered slowly, or never recovered. I may be wrong but I've...

Hi MerryB, I took midodrine for about 2 years. The side effects were difficult to tolerate and I had to start at a very low dose and was never able to take the full prescribed dose. Eventually I had to stop due to urinary retention which I understand is a common problem. The good news is that...