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I think, in fairness, you can get an NHS diagnosis of ME if you’re severe, just not any treatment. I was borderline whether I’d be “moderate enough” to be offered any or sent to deal with the community services. Will we get signed off as “no possible recovery or improvement in function” I doubt it.

People who claim they have difficulty getting out of a chair are also claiming they can’t walk a meter even aided. So, by walking in more than an metre unaided, they have already blown it. Except they are supposed to be able to do it repeatedly, as required, without pain and in a reasonable...

Well the women in the church is Salem all said they felt cold, didn’t they.

The MEA didn’t want to get involved, no?

The bill was read. So far there’s no indication it will be put through the faster-track “money bill” process, but that could change. https://www.benefitsandwork.co.uk/news/universal-credit-and-personal-independence-payment-bill-updates The bill has been published...

Mon dieu I have just done that survey. The design was a “slider” where you move the dot along a line, from 1-10. Except, the majority of the questions using this format required a yes or no answer, so no=1 and yes=10 or vice versa depending on the question Do people not do training for their...

Sorry to bother you @Trish I’m particularly interested in the Voice stuff given my history, if you are taking requests.

Yes I have asked. No I did not receive.

There isn’t, but the standard NHS advice is 5 x 30, which is why it seems additionally unfair to tell pwME via a dumb app to exercise for 30 mins per day- more than they usually advise people who don’t have ME.

Weird isn’t it, I thought exercise was recommended for fibromyalgia. But not for ME. They’re going to need a separate app!

Oh good I’m glad someone has FOI’d it

I thought the general exercise advice was 30 mins 5 times a week. Not every day. It feels to me like what has happened with newspapers. There’s very little investigative journalism in them, and people assume that if something is in a newspaper there has been some journalistic rigour, and that...

So make sure you pace, but also do brain training and 30 mins exercise per day. Disgraceful.

Will nobody think of the poor healthcare professionals? I feel like they need a psychological intervention. Very negative and self-perpetuating. Wow if they feel frustrated, wait until they get ill with something there’s no treatment for.

I hope these “antibiotics what can cure the ME” aren’t like all the other ME cures, which only work if you believe they cure you.

Apparently not.

Thought experiment. What does the fact that those in the study, who have ME/CFS, agreed to take part in the study say about “effort preference”? Somebody feeling unwell yet choosing to take part in research is making a greater effort just by turning up, aren’t they?

Thanks Trish. I’ve looked at IGLOO and it’s just an initiative about return to work, what the Individual, their colleagues Group, their manager Leader and the Organisation should all be doing. Like many of these, good luck to any Individual assuming their G, L and O will be at all interested...

Still looking for figures on people deemed unfit to prep for work but not awarded any 4s on pip. I want to determine how many people judged as unable to reach, sit type or speak are found to be able to prepare food, wash, dress and speak with an aid.

I got Covid last year and managed to 38c My normal temperature is 36.2, so even going to 37 is an increase for me, but I rarely manage it. Last time I was sweating and feeling unwell (PEM) I took my temperature it was 35.9