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Strongly agree. The same issue is discussed on the thread about the Irish HSE guidelines for ME/CFS here: https://www.s4me.info/threads/hse-clinical-practice-guidelines-for-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-ireland.42810/#post-590220 Again I agree, although I think it is...

I’ve brought it to George Monbiot’s attention. I assume that Sean O’Neill will be aware of it too, so hopefully The Times may cover it.

APPG minutes say: “The economic position of around £23.5bn cost to the economy of ME and ME-like symptoms was highlighted.” Does anyone know where this figure comes from?

The problem with arguing on the basis of the diagnostic criteria is that it implies that the Cochrane review (and therefore PACE) gave us meaningful evidence of efficacy using the “outdated diagnostic criteria for CFS” which included people “disabling chronic fatigue” who don’t have PEM. But the...

This reminds me of something I wrote in the a few years ago in the NICE Guideline thread: I know Caroline Kingdon, as she has visited me several time to collect sample for the Biobank. I strongly agree that specialist nurses with her type knowledge, understanding and experience would be...

Good article. Plus a link to Emily’s fundraiser for AfME at the end which is good to see. Thanks to the journalist, Julieanne Corr, and to James and Emily. And extra respect to Emily for standing by James and becoming his carer having only known him for 9 months before he became unwell.

I don’t know if this has been mentioned on the thread but I’m guessing that the UK ME Biobank’s NIH funding may be at risk. AFAIR that majority of its funding now comes from the NIH. If that is correct and the funding is pulled, I guess it maybe something that the MEA might consider using its...

Cholestyramine is referenced as an effective treatment in a review of treatments for Chronic Inflammatory Response Syndrome. Thread here...

I wonder if it would be possible for them to update their paper.

Thanks for the feedback. I will try to incorporate @Hutan and @Nightsong’s suggestions into the draft without making it too long. I decided to add this as I’ve changed the question to make it a request for action, in line with the WPQ rules. As I’m now asking for a more general review of...

According to Hilda NICE pays for it in England and the Health Departments pay for it in other parts of the UK (ie Wales, Scotland and NI): I’m concerned that the question may already be too long, so let me know if you can suggest wording which might improve it without making it longer.

Perhaps something like: To ask the Secretary of State for Health and Social if he will review the government’s relationship with Cochrane through its departments and agencies following the charity’s decision to renege on its commitment to update its review of exercise therapy for chronic...

I asked Hilda on bluesky: https://bsky.app/profile/hildabast.bsky.social/post/3likkk7n3vs22 Hilda: “In England, NICE pays for the national licence for the Cochrane Library, health departments for other parts of UK https://www.cochranelibrary.com/help/access#Funding_sources The UK Foreign Office...

Re-reading the Cochrane statement (https://www.cochrane.org/news/cfs) I’m minded to change the wording to “Cochrane’s decision to renege on its commitment”

I could ask her to submit that as a separate question.

Thanks. It’s ref 2 in my post (https://www.cochrane.org/news/cfs) Perhaps: “the editor-in-chief acknowledged that the review was out of date and would ‘not resolve all the ongoing questions about this globally important health topic’”?

Further to my posts and the responses above I have drafted the following written parliamentary question which I am minded to ask my MP to submit. It may be a waste of time but so be it. I can’t find details of how questions need to be formatted but they all seem to be very short and begin “To...

I contacted AfME to ask if fundraisers on platforms such as Justgiving and Facebook can be restricted to supporting their research work. Ruth Richardson, Director of Fundraising and Development replied: "We can certainly restrict to Research any income raised via fundraising platforms such as...

There are parallels between Fiona Fox’s appointment as director of the SMC and RFK’s appointment as US Health secretary. Without straying too far into politics, there are also parallels between the philosophy and tactics of the RCP/LM (of which Fox was a leading member) and those of the...

From scanning this paper I’m not at all convinced that CIRS is a syndrome which can be differentiated from ME/CFS. However, it is interesting that people with ME/CFS-like symptoms are reported to have improved after courses of colestyramine (or cholestyramine). These are the 2 small RCTs...