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I think I remember comment on the forum that one day you should write a book, and I think I remember you responding that you wouldn’t. That’s a perfectly good decision and understandable, of course, but if one day you change your mind and are also able to do it, or are able to contribute your...

A strategy would be helpfully posting links to the expert testimony from JE, stating his credentials, and links to the evidence review and anything else useful from the draft release and ask him to engage with those, not individual patients on Twitter who have not been involved in the process...

This article is currently available to read via Apple News service on my iPad. It appeared that it might be the full article (no paywall) but I can’t be certain. People with Apple devices could try there. It’s good. Sean O’Neil again.

I don’t like the way this petition centres its argument so much around the psychological “all in your head”. If ME was shown to be psychogenic and the therapies worked I would bite their hand off to do them until I was well. (As we know the key issue re NICE is that the therapies offered by...

Thank you @Sly Saint - that clarifies things a bit

I was initially concerned by the tone of urgency connected to these requests, based on what Countrygirl had posted on PR, and posted about it in another thread. I think on reflection, that the lack of transparency is a bit worrying. And where is the safeguarding and data protection for any...

Trying to get my head round this https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-2 the survey results on treatment are section 2.9.3 Participants’ experience management and treatment of ME/CFS From the survey 20 out of 26 reports of harm from GET is a small...

You may be right, I’m surprised by it, certainly and admit I haven’t done any checking of my own. I am concerned that it could be a genuine request and that the timescale appears to be so urgent. Oh for goodness sake these people!

I think this is legit and urgent. Just been on Phoenix Rising and @countrygirl has posted that she has been asked to collect as many patient accounts of harm by someone ‘from NICE’ (cttee member?) as she can ASAP, today I think. Her post is here ...

@Michiel Tack @dave30th It’s a job which shouldn’t be necessary but you do it well. Thank you. In the context of medical activism and politics apparent today around the NICE guideline it is a breath of fresh air to see this published.

I laughed when I saw the thread title. In the context of NICE ‘pausing’ the guideline publication yesterday and a lack of sleep I was fully justified. At least during the UK’s National Cherry Week, which I recently enjoyed, you get to eat cherries.

The lack of acknowledgment from the royal colleges that a small number of researchers have been leading patients and clinicians up the garden path with evidence of such low quality for decades is very clear. It’s disappointing but it’s much better to openly know where everyone stands, and what...

It would be useful to know the definition of CFS they are using, and on what basis they ‘know’ it is highly associated with pre-existing gynaecological pain conditions. A gynaecologigist might be unduly predisposed to see gynaecology.

I had my first AZ dose in March following covid in December. First dose I experienced a range of symptoms most of which resolved in 3-4 days with the exception of the sore arm which took 6 (reported earlier in the thread). 2nd dose was 2 weeks ago today. No side effects at all, not even a sore...

This comes down to questions of is one life worth more than another, and which countries are best equipped to meet the challenges of variants in my opinion. The U.K is a wealthy country, with the resources to develop a range of strategies, not just vaccine use, to meet the challenge of variants...

So basically individual patients are lovely, because they just have 'hysteria'. If individual patients are allowed to talk to other patients, they develop 'mass hysteria', which is much worse and horrible and scary. It's like putting water on a mogwai.

I had my first AZ dose a week ago. It was very well organised by a group of local GP practices in one of the surgeries. No queueing when I was there. It was very quick, I had a lift there, and the distances walked were small. It was a doable within my pacing capacity. If there had been a queue...

@Tia I also bought the Vytronix cleaner that you recommended (but for my student daughter who doesn't have ME). I tried it on my kitchen floor and a small piece of carpet in the hallway. I found it noticeably lighter to carry compared with my Dyson stick vacuum (Dyson V6? something like that...

I’m not at all surprised that the Journal of the Royal Society of Medicine didn’t publish your response, but I enjoyed it very much. Thank you @dave30th and @Brian Hughes. I hope we see it in another journal soon, is that the intention?

Yes you're right. I was thinking about how contact by patients via tweets etc with George Monbiot over a period of years has paid off recently. (eta at least it seems that way)