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I also found I soon learned to ignore a high level of background pain. I only really noticed it when it improved and then came back again. I thought, wow, I'd forgotten how bad it was and wondered how I'd coped. I'm simply not able to go for walks or exerc now but when I did I would get very...

Perhaps if Prof Sharpe did another twitter appeal? :whistle:

Yep, the clock changes really mess me up too. I also suspect that changing light levels have an effect so when daylight hours & strength of light (? not sure that's the right term) either increase or decrease beyond a certain point that messes me up - that could be related to migraines though...

I did end up with quite a thick file but not by choice. Even after diagnosis my GP at the time kept referring me for rule out consultation at every new symptom. I had to put my foot down and refuse to go to any more in the end. I was worn out with it. It wasn't that I was seeing him that...

Yep. I think this is why in the initial stages people think the treatment will work. Initially they're advised to cut back on activity to a level where symptoms are improved and they feel a lot better. The initial increments may well still be below any noticeable PEM threshold. So you could...

It sounds like the term push crash as you are using it might be a technique to avoid boom and bust behaviour. Boom and bust when I was diagnosed was used to describe what happened when a patient had a good day/phase/hour and attempted to make use of it (conveniently ignoring the theory patients...

This really, really, really annoys me. I am aware that there are some people who might obsess about some things. However, there are a great number of people, chronically ill and apparently healthy, who feel new symptoms or existing symptoms becoming worse and don't do anything at all about it...

I find it interesting that the people I met who developed ME post cancer were told by the cancer nurses the post treatment fatigue would resolve itself with time. They fully expected it to go away eventuallyand had no knowledge of ME beforehand. I notice a number of the authors are from a...

I guess it depends on how you define conflict of interest and if you feel the need to declare it. Again. Depending on how who you are, of course.

Done.

Ah, but do you have a HGV licence? :laugh:

@PhysiosforME I have downloaded the information document and read it. There are two links embedded but neither work for me. I can't simply copy and paste the text into.my browser because of the formatting of the document. I am using a kindle fire tablet.

Done. Thanks for all you've done to date @dave30th. :thumbup:

I'll add another. Dental problems. Used to the weirdness that is ME, taste problems and all,.combined with the difficulty of actually access help for anything much I just ignored this when it happened to me. Turns out I had a cavity developing in the root of a tooth that had root canal...

Basically, as others from.the UK have said, I add my own information. I hope you find the form you're hunting for @rvallee. In the meantime if it's any help.... Here's the thing about forms in my opinion. They can both guide you to give the relevant information while at the same time...

One of the biggest bugbears forme about some therapies is that there is an assumption that the individual may not be coping in the best way possible for them. This may be true sometimes but not always. If there is an intrinsic part of the therapy that undermines the person's faith in their own...

Has this guy been given unsupervised access to the Harry Potter books? Presss sounds like parceltongue to me.... He has all the arrogance of one of those Slytherins.

Good point.

I'm not so sure. If the article discusses the invisible illness angle then maybe. I think there is still very much the idea that those generally with chronic illness just have difficulty with some aspects of life whereas many of us struggle with all of it. I think most people would liie the...

I think what @freddyV is saying is that many people with ME often hear the comment "oh,.you look well!" as in you don't look sick therefore in many cases maybe a photo of a patient wouldn't do justice to the suffering caused by an invisible illness . I think this is true in the milder stages...