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1-10 points, like our scale will when the MEA have finished adding to it. Are you moderate-moderate or Moderate-severe? Or mildly moderate severe?

Meh the average Joe will absorb the headline, the headline implies ME can be seen in blood samples. Job done. 95% of people dont care about Carson whoever he is.

A candidate for a @ME/CFS Skeptic deep dive hopefully?

My constant complaint -since Invisble Women was written- is that I’m very short. I’m so short that I’m within an inch of being a little person’s height. My experience of the world is actually really different to “average height” people. I can’t just reach/sit the same way, if I want to sit...

I don’t know but I don’t think getting an NHS ME diagnosis is the biggest problem in all this for pwME. A GP can diagnose it, it’s really going to affect anyone who had to go private for ADHD or Autism diagnosis (women, mostly). For people with ME who have a diagnosis, are we going to be...

In theory, I don’t see why not. I didn’t even attend one NHS clinic in person - it was just online, blood tests etc arranged by Gp taken by community phlebotomist.

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.