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It seems as though a substantial percentage of us have a sore throat as part of PEM, or more often: Poll - Sore throat and tender lymph nodes Has any work been done to work out what is going on with this? There is so much done with the symptom of fatigue, but maybe some work on the other...

When I did the 2 day CPET, I had full-on PEM the night after the first test - the feeling dreadfully unwell, the pain that felt like my lower limbs had been crushed, sore throat. I was in a trial, so the second test was 48 hours after the first one, and by that time, I was feeling fine again...

That's a nice article by Louise.

There's the example of hives caused by stress. If someone is stressed, then they might develop the itchy rash. Heat or cold or alcohol or some medicine might also cause the rash. Stress causes the rash to happen, so perhaps the rash can be termed psychogenic. However, the level of stress the...

There was a brief piece on TVNZ this evening linking the long term effects of Covid-19 with ME/CFS, by reporter Thomas Mead. @Carolyn Wilshire was great, saying that people should not be told that it is all in their head. Prof Tate was interviewed in his lab, with sciencey-looking pipetting...

I don't think it's as bad as that. There is work being done. It's just that it isn't advanced enough to be trialling treatments. It's still a sad state of affairs, I agree. But there are ideas. Actually, as Michiel's list shows, we need funders to focus less on treatments, with their...

Yes. An individual doctor takes enormous risks to 'ask the question', that is to question the established practice. Also, someone may actually ask the question, but, if they don't have a medical degree, and especially if they are a patient, they may be ignored. I think we have to ensure...

I think this is important and helpful for anyone arguing that 'CFS' not be used.

I find the site frustrating. It has some great parts and is potentially a really useful resource - a brief description of the illness and treatment and a curated selection of links for medical professionals. But there is quite a lot of material that is not supported by evidence. EDS and MCAS...

The picture from the first page. This woman with her immaculate eyebrows and polished nails and a serene smile does not look very troubled by a 'chronic, complex, debilitating, multi-system illness'. I know getting the right picture is hard, but maybe some thought could be given to getting a...

It's really good that the clinicians have made this website, not least because it makes the assumptions that guide clinical decisions transparent. I'm going through the content to work out if this is a resource I would like to direct clinicians in my country to. About ME/CFS page There's lots...

In amongst the sociology-speak is some interesting analysis. This work is set in Norway - there are some observations about how patients get access to welfare benefits there. What is very clear is that it matters what office is assessing a claim and it matters what GP you have. It also...

From the first paragraph of this paper: I've looked at NZ data a few times now and the doctors manage to identify a straightforward problem to code almost all of the consultations to. I doubt that these doctors or the patients are particularly unusual...

I think it was more that they wanted to make people receptive to having treatment i.e. understanding that their problem can be fixed and that the treatment is CBT.

Related to that, there's an interesting use of speech marks in the acknowledgements.

Problem 1: self-selection of patients and relatives in the decision to attend a session. Problem 2: selection of patients and relatives in providing feedback This 'training' was done as a 1 hour and 45 minute single session, in groups of about 30. The assessments were done at the beginning...

This was a completely new offering and involved providing presenters with access to patients' personal medical information. (Quite aside from the fact that the researchers were aiming to convince vulnerable patients and their families of ideas that are possibly not supported by evidence - with...

I'm not sure that is all hanging together. 'The biological clock of ageing is slowed' - One researcher found telomeres were abnormally shortened in people with ME - I'm not sure I believe that either, but it would be a sign of the opposite - biological aging advanced...

It makes me happy in many ways that the people who have been standing with the ME/CFS community, people like David Tuller, are suddenly very well-positioned and in demand to talk about post-Covid illness.

Yes, it's a tricky thing. If people are bringing their skills and their effort to do something of worth regularly, should they be expected to do it for free? Often the people who are most expected to work for free, and who do work for free, are the people for whom a small salary would make the...