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I wonder how many GPs will just decline to engage with the issue. For example my GP practice refuses to engage in any way with PIP applications, though hopefully they might see this as a less complicated issue.

For me there was no gap at all between the ending of the trigger infection(s) and the onset of my ME. My initial onset was associated with an active EBV infection, but subjectively I had no clear point where I could say that the glandular fever (mononucleosis) ended and the ME began, the same...

Unfortunately Prof Crawley, judging on the basis of her press interviews on ME, is strongly committed to the belief that behavioural changes will positively impact on brain function:

The ‘cured’ evangelical former patient seems to be a feature of ME/CFS and it is difficult given the high level of misdiagnosis (circa 40%) to retrospectively be certain if they did or did not have what is now understood by ME where we would only expect to see full recovery in as few as 6%...

Thank you @lunarainbows , a very useful account.

7) various Thyroid conditions 8) HIV Does there also need to be a list of things not commonly tested for that should be considered 1) Mitochondrial disease 2) Lyme’s disease 3) MS etc

Why is it believed that over testing results in harmful false beliefs? Is there any evidence for this? Obviously any medical assessment has costs, both in terms of money and in terms of energy expenditure for the patient, so ideally unnecessary testing should be avoided, however, given we don’t...

Also did the researchers have a control group of health care workers who did not have Covid, given the demands of working in health care through an ongoing major pandemic?

I am not motivated to read the article but if depression is assessed via questionnaires can we be sure it reliably distinguishes between depression and Long Covid, give psychological questionnaires often assume physical symptoms such as fatigue or reduced activity levels are rather indications...

@Wyva, I hope this is not too long, and unfortunately the more I tried to keep my English clear and simple the worse it got. I won’t mind if you don’t want to use it: Fellow ME sufferers in Hungary, greetings. I developed ME some thirty years ago following an Epstein Barr Virus infection...

Here in the UK the official Covid death toll was significantly lower than the excess deaths figures, but I have not seen recent figures to know if the discrepancy between the two continues at the rate it was a year ago, when the discrepancy in total deaths was in the region of 20,000 or 30,000...

[tangent alert] I was unaware of even the possibility of orthostatic issues in ME for the first twenty years I had the condition even though I had seen a range of consultants, participated in a number of research projects and had a course of ‘treatment’ by a specialist CFS/ME service. Some ten...

We really need data on how many people diagnosed with an MUS turn out to have a treatable medical condition, and what the costs, including worsening health and preventable deaths and subsequent legal actions, are of being misdiagnosed as MUS resulting in delaying or failing to treat a missed...

Thank you @Andy

Thinking back to when I was still working in the NHS, it was part of my job within my clinical specialism to work with/support professional and voluntary groups within my district, my region or nationally. So time and travel would be covered by my host trust, however this would not be so for...

If I remember correctly the Society’s turn over is not large enough for it to need to submit itemised accounts to the Charities Commission and they have repeatedly declined to reveal the size or the make up of their membership. Their conferences seem to have a distinct BPS angle and the number...

Thank you for all raising this/these issue(s). I am not up to fully following the thread fully at present. However, given the impact ME has had on my life when acquired in my 30s when I already had an education, a career and a friendship circle, I can not but be aware how devastating in the...

@Wyva, do you have a time scale? I want to contribute, but have had a busy week, visit to the optician’s and a new electric metre fitted today, so may need a few days to reclaim my brain.

Great to see this donation surge in these last few days, fingers crossed it will continue. @Sean, this last link doesn’t seem to work for me. Could it be the extra ‘/‘ on the end in contrast to the previous postings is problematic (for some?).

The authors do hint that there are the right and the wrong sort of online groups, though I guess our and their understanding of what fits into which category may not be fully congruent.