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I can’t remember the exact wording but she referred to having ME triggered by Lyme’s.

So this is the social but what about the psychological? (Note please avoid breaching site rules.)

This is probably a tenuous link, but I can experience what I term ‘jamais vu’ particularly when in PEM. It used to happen more frequently when I was still working and had a daily commute, when I would suddenly have no idea where I was on a road I knew well and would have to wait until cognitive...

We really need an in depth study of the psychosocial factors present in clinicians diagnosing and researchers promoting FND. I am not denying that some groupings of patients with an FND diagnosis represent a meaningful clinical entity, but I doubt the proponents of FND empire building and...

It looks like this is an international issue. We are seeing it regularly in the UK, perhaps better reported now because it has come to be seen as newsworthy. Missing Millions France have reported there are regularly cases there where young primarily women with very severe ME are refused...

I just tried it using my finger to out line the shapes. For about five I thought this is easy, then froze having forgotten what I was meant to do. Mentally stopping and starting again worked until after the next five when I froze again. This is interesting and I wonder if it might be happening...

It was surprisingly hot for the Lake District so it spent most of its time in the shade of the tent flap.

If only the ‘already diagnosed’ are allowed a GP, how does anyone with a new onset condition get diagnosed? Isn’t the role of a family doctor much wider than managing long term conditions?

It would be interesting to know reliably that different viral infections have different rates or types of long term sequelae as would appear to be the case, unfortunately I suspect this study falls very short of that. Presumably influenza was choice as a comparator for reasons of convenience...

Being facetious, I have over thirty house plants in my home, though that also includes half a dozen or so that belong to my goddaughter who does not have room for them in her current temporary accommodation. So I look forward to a total remission in my ME imminently. Just one problem, I have...

None of the first five helped me avoid EBV and ME. Only the final one would have any potential benefit, and even that is not a guaranteed preventative. Indeed for a very small percentage vaccination itself could trigger a Long Covid type condition. As said above the only sure fire way to avoid...

Thank you @Jonathan Edwards, your clear thinking and scientific rigour are an important contribution to ME/CFS advocacy, as well as your commitment to discussing through disagreements.

Especially if you consider the iller some one is the less likely they are to continue in the study. Without clear evidence (sorry haven’t checked the actual paper) on why people dropped out, the loss of 75% of the sample renders the final assessments meaningless.

A vital issue for me is the importance of accurate and relevant information that is NICE compliant put out by the NHS and how to ensure there is training for all new doctors and access training for current medical staff that explains as much what can not be done as what can be done, ensuring...

Because we don’t know how many of us looking at this don’t recognise a specific trigger or how many with gradual onset if the longer the gap between any possible trigger event and the ME onset makes any possible link more tenuous, it is difficult to know how meaningful these figures are...

It is good seeing lots of new comments too.

My onset was fairly straight forward in that I had glandular fever (EBV virus confirmed) and it is not possible to say when the acute condition ended and the ME began as there was continuity/overlap of symptoms. I did improve over a number of years (4 years?) and regarded myself as recovered...

The MEA was monitoring such as job adverts and information put out from specialist services, contacting the relevant trusts when they identified contradictions with the new NICE guidelines. Presumably this was part of this role. I think this did help, at least superficially, in that services...

Hear, hear!

Such a clearly written piece. Thank you for sharing it.