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Perhaps a tangent, but the things I wished I had been told about early on in my ME, and which getting on top of actually makes a difference to my everyday life, are PEM, orthostatic intolerances and food intolerances.

We have a number of unanswered questions in relation to this: What if any are the differences between ME and post viral fatigue syndrome (PVFS), particularly in relation to the potential for spontaneous recovery? Does PEM distinguish ME and PVFS in any way? Is it accurate to say that people...

I don’t really understand the process, but it sounds rather like a ‘fishing exercise’ if you will pardon the pun: Not clear what either no response or a positive response actually means, though obviously interesting if you get a positive response even if it is transitory.

It is even more ironic in that BPS advocates argue because CFS is solely assessed and diagnosed on the basis of self reported subjective measures, it is only possible to evaluate it by subjective measures and there is therefor no need to be concerned about potential bias in unblinded trials...

It did end up in the courts, though my friends had not been concerned about compensation, rather sorting out what went wrong, both in surgery and in the subsequent 18 months it took to get the X-ray. Unfortunately they were never even given an apology by any of the various services involved...

I suppose it is very hard to identify the extent of this problem, because it is not something doctors would normally record. I guess you rarely see in medical notes ‘deliberately ignored reported symptoms because patient has fibromyalgia’. The is a very real risk that doctors are being trained...

I am reading the original “But I was told that they don’t treat patients with fibromyalgia, like me, regardless of what they come in for” as the person with fibromyalgia not being treated at all for any presenting symptoms or conditions whether they are related to the fibromyalgia or not, which...

The Times has published Dr Shepherd’s response to the problematic article ‘Why is Britain the Long Covid Capital of the World. His most telling point is the figures indicate that estimated levels of Long Covid are no higher in the UK than elsewhere, and indeed are lower than reported for some...

I agree, in retrospect the most important things I could have been told about in the early days of my ME were in order of importance: PEM orthostatic intolerance the risk of food intolerances sensory hypersensitivities. I have included sensory hypersensitivities because, though in extreme they...

Not fully read it yet, and everyone else may be familiar with this review article, but if not it may be relevant to this discussion “Chronic viral infections in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)” Rasa et al, Journal of Translational Medicine 16 (2018) link to paper...

Please not just more use of questionnaires!

Would it be better to use a phrase that is neutral about the perpetrator’s intent. ‘Gaslighting’ implies the perpetrator is both aware of what they are doing and are intentionally doing it to undermine the ‘victim’? No doubt in some situations there is both a level of awareness and malicious...

Though we do not yet know the possible levels of the Long Covid of the form similar to ME/CFS we will see in children or young adults exposed to the virus. This may not currently seem to be the normal course, but even it effects just a small percentage it can still devastate young lives and...

Yesterday I was sent a link that may help people access the Times article behind the pay wall. Also if it works you get to see the comments, some reflecting the harm this article is contributing to for Long Covid sufferers as well as on people with ME by advocates of the psychosomatic, by...

Unfortunately not as balanced an article in today’s London Times, Why is Britain now the capital of Long Covid? see https://www.thetimes.co.uk/article/why-is-britain-now-the-capital-of-long-covid-grjpvzfvw?fbclid=IwAR2sVlCexvcM6vFUd4nM_eL2-X_5D2Qbr2nFCMVdy2K1P09EMmGSdF1ygFs Sorry it is behind...

Interesting that they are trying to understand their client group, but still get it so wrong. (What follows is for readers here preaching to the Choir, and is probably written as much for my own benefit, so I don’t necessary recommend people bother to expend energy reading it.) In relation to...

Why can people not accept a simple precautionary principle: if you respond negatively to exercise then don’t try to exercise through that negative reaction? Rather establish your own threshold and remain within it. If you don’t have a negative response to exertion, then feel free to continue to...

An other question I wonder about is there a hierarchy of symptoms, or even several hierarchies of symptoms. For example do some symptoms only appear if you already have other specific symptoms, in which case specific symptoms or symptom patterns may be indicative or associated with the severity...

Over the years new symptoms have been added to my ME, and they now re-emerge during PEM. However when I am in a period of relative remission not all the symptoms reappear in every PEM episode. I usually consider two options in relation to this variation, how well overall am I managing my...

As this is undertaken more routinely with people with ME, it may be that CPET is seen to be necessary for an ME diagnosis, so in that sense it may become part of the diagnostic process, but as it is obviously not sufficient for an ME diagnosis in another sense it is not uniquely diagnostic...