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I think we would be aware of a 10% prevelance in our local communities/families.

Sorry I seem to be struggling cognitively today, the draft for this thread disappeared several times and then posted before I was finished. Also I manage to delete the contents of this second post several times: 'NHS doctors brushed off our condition as menopause – what we suffer from is far...

'NHS doctors brushed off our condition as menopause – what we suffer from is far worse' https://www.mirror.co.uk/news/health/nhs-doctors-brushed-condition-menopause-33179607?fbclid=IwZXh0bgNhZW0CMTEAAR2xm6RVY_jdTbG8pW9LwRqG0h5FZpl9niy3pcKJS30n-X3aLLqPtckf3u4_aem_vbdi1bwgIUS3D0L0ulVZuQ

This may only be available to people in the UK.

Are you referring to the BBC’s podcast The Life Scientific see https://www.bbc.co.uk/programmes/m0020xrk Note It is free to listen to, but you do need to register with the BBC. I have not listened to the full 30 min yet.

Whatever the name, it will come to be used as code for psychogenic.

I think you are correct @Trish, but I also took the implication that they felt anyone writing such a paper should automatically push the biological basis of ME. However is this appropriate when you are trying to engage a potentially hostile audience.

I have just done the survey, there were parts I struggled to respond accurately to as I am covering thirty years of ME. Also I was unsure how to rate outcomes for the experiences that felt good whilst happening, but had no lasting impact. Also I missed out several things I tried just once...

I understand the parents/carers wanting to write this letter, however what I saw as important in @Jonathan Edwards paper was that it was scrupulously accurate containing only points indisputable in a legal as well as an academic sense. He deliberately and I believe appropriately skirted the...

My feeling is that some people are lucky to experience some spontaneous improvement and some are not. Avoiding crashes may create the best circumstance for any spontaneous improvement to occur, minimising the negative effects or worsening due to over exertion and/or PEM, but this does not mean...

Do we see PEM in these patients with fatigue that is diagnosed as ‘CFS’ post sarcoidosis or are seeing a confusion between the symptom chronic fatigue and ME/CFS?

At times in science we see bright but over confident individuals produce a theory that is plausible on the basis of some evidence, that changes the direction of research, then other have to put their life into demonstrating the first person was wrong or at best oversimplifying. It is one thing...

As someone who has had ME for thirty years, two and a half years does not very seem long-term to me.

It is not necessarily a bad thing to share advice based on either clinical or lived experience but it is important to make clear that it is based on this and not on research or any accurate understanding of any underlying physiology. Then people can decide for themselves how much reliance to...

As far as I know we are still not able to donate blood here in the UK. Which I am fine with, though no one seems to discuss the inconsistency of this with the many people who believe ME is psychogenic. [added - I meant also to say this inconsistency was previously more significant when the...

In relation to very severe ME/CFS presumably it is exceedingly rare to be looking at parenteral nutrition avoiding the gut completely, rather getting nutrition directly into the cardiovascular system. In the cases relatively recently in the news, discussion has revolved around enteral feeding...

I also find it disturbing that the gluten free bread I buy does not seem to go mouldy very often. Usually I throw away what is left after a week out of concern rather than any visible deterioration.

Over the thirty years of my ME I have experienced what seems like every possible variation of sleep disturbance from hypersomnia via sleep reversal to insomnia, but overall I don’t think there any simple linear relationship between severity of my ME and the amount of sleep I am able to get. I...

Yes, pacing is not a treatment, pacing by itself will not result in any improvement in the underlying condition. And to suggest it might is no different to the assertions that recovery is possible for all by the BPS cultists. Pacing only helps minimise any harm from over exertion and PEM. The...

It might be worth shopping around for different gluten free breads as I had given up any bread for quite a number of years because in the past gluten free bread was inedible, but now there are a couple of brands whose brown bread and granary bread is to me as good as the ‘real thing’. Gluten...