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An extension of that logic: Question: Half the patients died in your clinical trial. Why did you not report this? Answer: We did not consider this a concern because death was not an eligible outcome in our review, which focuses on patient-reported outcomes,

Hugs to all who are struggling with this awful uncertainty. The government ministers either don't have a clue how distressing this is for sick and disabled people who depend on PIP and other benefits, or they don't care.

There's a thread on the first one on the list

Nah, no need to wonder if... It's absolutely clear they are making it up as they go along and haven't a clue what PIP is for. I saw a good interview yesterday with a Lib Dem who made it very clear she understood PIP is not an out of work benefit, and taking it away is likely to mean some...

My email asking for recordings of the February and July meetings, and the reply: Edit 1st July 2025; I have removed the copy of the reply from ELAROS from this post at the request of the sender. The gist is that I was refused permission to attend the webinar as I'm not a clinician.

The thing about so called malingering is the idea of 'secondary gain'. I think it is incumbent on people who accuse pwME of malingering to demonstrate what we're supposed to have gained. Is it the dismissal of our reality by clinicians, the suspicion, disbelief and rejection by employers...

If the MP's accept that so called climb down I'm disgusted. Why should someone who needs PIP tomorrow be less worth supporting than someone who was awarded it today?

How can they justify making such sweeping statements about people with Long Covid having neuropsychological problems based on a tiny sample preselected as needing neuropsychological screening.

I wonder how much these comparisons between disorders is a artefact of questionnaire design. Studies based purely on questionnaires appear to me to be pointless.

Awesomely awful.

Maybe someone could send them a link to our PEM fact sheet.

Last I heard Leisk was a fitness instructor making up complicated protocols and selling vitamins etc to desperate people. We have a thread on his ideas. The true nature of an autoimmune disease, Leisk and Nocon 2021

Rename the article What is the effect of persuasion on how fatigued people fill in questionnaires about fatigue....

I think part of the problem with arguments about whether PEM must be delayed to call it PEM may be the cumulative effect of all exertion contributing to PEM, so was it the shower I had yesterday, or the chat with a friend today that triggered it? If PEM sets in immediately after the friend...

I have had an email reply from ELAROS refusing me attendance at their webinar and copies of the recordings of the webinars. I'm crashed and not able to sort out copying the email here at the moment. Will do so when well enough. The gist is it's intended for clinicians to discuss the running...

Because she is recommending a particular, and you say 'equal to tap water', dose of something that is harmful in larger doses. A lot of people are not able or willing to research things as thoroughly as you say you do, and a lot of people think, my doctor recommends dose x of chemical y, but...

What research evidence does she use to say what dose is safe? If it's just the amount water companies are allowed to put in water that is safe for drinking, then why bother to take it at all, why not just drink tap water? And the evidence that drinking tap water doesn't cure ME/CFS must surely...

PIP is not means tested and is not related to whether someone is working, it's an allowance to help cover the extra costs of being sick or disabled. The stuff about trawling through bank accounts to look for fraud is irrelevant to PIP, it's only related to income related benefits like UC,

There seems to be a strong belief among clinicians that what is good for keeping people healthy when they are well must therefore be good, and even curative, for sick people. Hence rehabilitation not convalescence. Hence - exercise, sleep hygiene, healthy diet, going to work... are all pushed as...