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Reinventing the emperor’s outfit

I’m another who tends to avoid fatigue as a description for how I’m affected. I rarely feel sleepy during my waking hours. I rarely nap. I do feel debilitated like you do when you have a flu like bug especially during PEM and extra especially if it’s a bad insomnia one. As moderate level ME...

I can’t see the post on Xitter but I saw the posts Adam did on Facebook about John Rutter and the article linked included a description from Rutter describing his current situation (my paraphrasing) he said he’d had ME for 7 years in the past, he has improved to a new “normal for him”.

Even their description of symptom reduction is bs. You may be able to sleep at more normal times or get zonked out so you’re not waking but most of the meds that do that have side effects you’re not necessarily going to be getting actual refreshing sleep from them. Same with pain meds. And...

No surprise the emperor is still parading the corridor of Kings College Psychology in the altogether with people still pronouncing their admiration of his “recovery” new clothes

I’m just getting started last month on Atorvastatin. Normal starting dose my GP usually prescribes is 20mg. because fatigue and muscle pain are common side effects I raised this with them and they agreed to prescribe 10mg instead and see if this works ok when I have a blood test to monitor...

On a political level the appearance of there being an effective service “a camouflage service” in place is much worse than having no service in place as it prevents people with power to change things from seeing the hole that exists in reality.

Maybe someone will send letters about this aspect of Camelford cover up to the Documentary team, the Guardian and other “ broadsheet newspapers” (to use the old terminology)

T Chalder and R Moss Morris producers of bricks in the wall We don’t need your psycho education, we don’t need your thought control

I am in contact with a few people my age group 60+ some but not all or have disclosed health problems of various severity & risk. Their ages haven’t prevented most of them working til their chosen retirement age. One has taken up piano since retirement and so far has got up to grade 7 theory...

Agreed. I got CFS (NHS) diagnosis when I was early 50s, I had gradual onset ME for a decade before that according to Dr I saw privately after NHS diagnosis. Menopause was definitely a complication in trying to work out what was wrong.

This would be my take also.

Apologies for not having read all the details. I always come back on anything that is recommending people do any type of exercise to my basic question. If I had the capacity to do these exercises why wouldn’t I use that on doing something I have on my long list of things I need or want to do...

It only becomes an issue once the NHS has the approval and funding then it is their job to contact people and I hope ME organisations would be informing them that there are people who are cut off they will need to find.

The word would be spread among people with ME/CFS way before the NHS took any action we would be notifying our GPs not the other way round

I have only skimmed this thread but I agree that the good elements that already exist should be considered before putting people’s cognitive energy into something that may be very hard to pin down.

I think the pharmacies at Tescos are doing them

I found their information useful when I was involved in caring for parents and also ran a carers support group at my old work. I sent a lot of people in their direction.

Likelihood

If able perhaps you could let Sean O’Neill about this. He could maybe make use of it in his coverage.