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Moderator note: A number of posts on this thread were in breach of Rule 1 - no personal attacks or public accusations. Accordingly, some posts have been edited and several have been deleted as they were responding to now deleted material. Please can everyone be mindful of our rules going...

I think the strongest evidence for pathophysiology currently is that patients all around the world describe their symptoms in similar terms... whether or not they belong to Internet forums or support groups. There are degrees of difficulty but the constellation of symptoms are remarkably...

I’ve just been looking at the Trust on the Charities Register. It was set up in late 2017 with the purpose of providing respite. Currently they are fundraising to purchase a facility - planned to be near Thames. So in its infancy. Just over $20,000 in the bank at the end of the 2017-2018...

I’m fairly certain that a device like this would make me feel very unwell very quickly. Travel in a car or train where there is vibration makes me feel awful. It’s not motion sickness - that’s a different feeling. It’s the feeling of being shaken around that completely wipes me out.

Or indeed, it’s profound bloody tiredness before, during and after accustomed activity...

I can’t access the sci-hub link...:(

A very good article I think.

Wouldn’t it be nice if in fact a balanced article appears - but I rather think it is more likely no article will appear if the newspaper has suddenly realised they may have a problem with the suggested narrative....

Amitrip really doesn’t agree with me - even at 5mg doses. I just get lots of side effects and no benefits. I have resisted trying anything else.

The management section is not good. It’s almost like it’s been done in two halves by different people. The first half on diagnosis and symptoms is ok, but the sections on management and prognosis are not....

Moderator note - please be mindful and stick to posting on the thread topic - the quality of life study.

So pleased for you @Woolie :) - long may it continue!

I don’t have a baseline, I just have a limit that I need to not exceed. That limit varies from day to day, week to week. It doesn’t seem to depend on how much or how little I have done in the preceding days or weeks - unless I have really overdone it, in which case my upper limit is...

When you read further on their page, it says that this fundraiser was designed by people with ME, and it says that people need to make sure they don’t exceed their energy envelope. For me, it would have been a better fundraiser if it was just family/friends walking for people with ME. T-shirts...

But maybe, just maybe, it might change how ME is perceived.....?

Plus - it seems to me there’s an assumption that it’s just exercise that’s the problem. Which I guess is not so surprising given that the researchers are exercise physiologists. But for me, cognitive load is a major factor as is sensory load. Even if I could safely ‘exercise’, I don’t think my...

No no - we can’t be trusted to do that. Don’t you know we have no idea how to manage our lives at all....

I find that graph of GP visits/prescriptions very interesting. Surely this is something that could easily be looked at further?

This seems to me like they believe the only reason we can’t exercise is because we’re doing it wrong....

It strikes me that although I am probably as active as most ‘sedentary’ people, looking at activity for every minute would show how slowly I’m getting things done, and how each period of activity is followed by a period of rest. There wouldn’t be any spikes of anything that looked like moderate...