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Are the people doing HELP apheresis measuring oxygen levels in venous and arterial blood in their patients? And are all the Long Covid patients tested showing sticky/black blood? If blood is so sticky, does this mean the individuals have a high risk of dangerous blood clots? This does seem to...

That's a really tragic situation. But I can't understand this bit: Unless an individual has other treatable conditions, I don't know of any treatment for ME/CFS, let alone ones costing that much. I hope she can get better medical care.

Posts about NHS England and its section called NHS Health Education England have been moved to: United Kingdom: National Health Service (NHS) news

I agree. We've suffered 30+ years of psychiatrists getting it wrong. Let's hope the functional neurologists don't get given their turn to wreck more lives.

2023 Week beginning 28th August 2023 Cochrane Exercise therapy for ME/CFS review The S4ME committee has sent on behalf of members an Open Letter to Karla Soares-Weiser, editor-in-chief of Cochrane, requesting: "1. The immediate withdrawal or retraction of the 2019 Cochrane review 'Exercise...

2023 Week beginning 20th March 2023 Trial by Error by David Tuller What the Hell is Going on with Cochrane's Long-Delayed Re-Review of "Exercise Therapies"? A great summary about the missing progress at Cochrane concerning their review on exercise as ME treatment. "It is more than three years...

Hi @Megsyjenks, welcome to the forum. I had a quick look and found these threads: Recommend soft safe earplugs, such as a soft medical grade silicone that immediately returns to its default manufactured shape [edited] Noise cancelling headphones! Oh Joy! (and other ways to block sound) Help...

I think your comment was correct. In Hilda Bastian's update on the IAG in August 2021 she said this: And continues on about the process in some datail...

Indeed, an excellent comment, thank you Peter. I hope you don't mind, I've copied it to post here: Peter Trewhitt 5 hours ago In 2020, following further concerns and complaints, Cochrane announced the start of a completely new review process but delegated any response to the issues already...

That concerns me too. By sitting on the same platform as quacks and when that platform belongs to the quacks, they give credibility to the quackery too.

Those metaphors about flood and fire are utterly ridiculous and insulting. Like you, Hutan, I continued with my normal life as best I could when I got ME, to my long term detriment. On the other hand when I got what was probably glandular fever some years earlier, I was bedbound for six months...

Not necessarily. If, for example, autism is caused by a genetic or environmental factor such as an infection, then that factor or group of factors might also cause or predispose to life shortening problems unrelated to autism. Or, as has already been pointed out, autism is likely to make access...

While I agree with all the points well made by Hutan and others, I do think, while Cochrane still exists and is regarded at least by some clinicians as providing gold standard reviews, we need high quality unbiased reviews of the evidence related to exercise therapy and CBT for ME/CFS. If both...

A copy of the whole email: Solve Advocacy: Emily Taylor Reports on Efforts to Form New Disease Coalition Energy Saving Summary Read: Solve’s Emily Taylor shares insights on building an infection-associated chronic conditions coalition Register: October 24 national webinar to feature findings...

Thanks Peter, yes, I noted that it has been going on since 2015 in the attachment to the letter and linked the history, and commented that it had been revised 5 times. Good to remind us this has been going on so long.

Well, they did end with 'King regards...

And they describe it as a research team presenting new research. I mean what the...? No sign of any new research in any of their verbiage, just unsubstantiated opinion based on prejudice.

Many thanks to #MEAction UK who have now added their support to the letter and are spreading the word about the petition on social media.

Thanks Andy. The petition is still necessary and worth promoting, as the reply makes no mention of when and indeed whether the 2019 Larun et al review will be removed.

This has just come by email from the editor in chief of Cochrane: _________________ Dear members of the Science for ME Committee and Forum, Thank you for your email and sharing the open letter and petition. After an unplanned hiatus, the Independent Advisory Group resumed its work last month...