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Prescient comment by @CRG early in June "Great work on getting Ed Davey to write to Kamal - it's important that both Kamal and Javid are the focus of continuing polite questioning -it's quite possible that Kamal would be in post longer than Javid."...

Thanks for pointing out the above @Sly Saint. It is clearly at least version 2 from the original ( which was posted before March 2019) because of the reference to the new Nice guidelines. It lists the staff but Dr Lazarova is merely described as the clinical lead without mentioning her...

I have not had a fourth, and intend to refuse further vaccines until there is more understanding of the damage it can cause.

Very interesting @Andy but I am interested to know who has had a fellowship grant relating to ME. The research areas that Lord Kamall describes above can't possibly relate to BPS type studies so I am curious about who has received this funding. Perhaps Julia Newton's work fitted this category?

Thanks @Andy. The letter from Lord Kamall was to Ed Davey M.P. who gave permission for it to be posted here. Might it be worthwhile to try to apply to the MRC specifically for a fellowship grant quoting Lord Kamall? I'm not sure how the funding allocation works apart from what Kamall said ( did...

We recently had a letter from Lord Kamall via Ed Davey our MP. See https://www.s4me.info/threads/uk-parliament-me-cfs-announcements-statement-by-health-secretary-sajid-javid-12-may-2022.27591/page-8#post-421798 "The Government funds research into ME/CFS through the National Institute for...

Thank you very much. I'm not clear as to structures, participants etc and will be glad to be brought up to date. Exciting times.

https://www.science.org/content/article/what-causes-long-covid-three-leading-theories Clues to long covid by Jennifer Couzin - Frankel Tweeted yesterday by Resia Pretorius

I would welcome a new thread on the ME/CFS Delivery Plan. ( is this a formal allocated name? I don't remember it but that is likely to be my cognitive functioning) I am quite confused about the various aspects of Sajid Javid's project. This is probably due to being able to spend less time on...

Loved it.

I feel uncomfortable not knowing who the patient members are and what is their remit. Is their remit to represent themselves as patients or to represent the patient community? They are different. If they represent the patient community, there needs to be a way for the community to interact...

I have factor V Leiden. This is often described as sticky blood or blood which is more liable to clot in certain circumstances such as immobility following surgery or during long haul air travel. A blood thinner, low molecular weight heparin, is often prescribed in these circumstances to prevent...

Thank you @CRG . I am lucky that Ed Davey is a responsive MP. He has spent time learning the issues in ME and decided himself to write to Lord Kamall in response to a letter from me to him. I believe he has now written again. I will be glad when we hear details of more research funding.

I have posted this here because it relates to Sajid Javid's announcement but @CRG has posted some interesting details on https://www.s4me.info/threads/medical-research-council-funding-to-2025.27917/#post-421639 I have been in contact with my MP over the last few months with concerns over ME...

How can Javid's commitment to more funding for ME be met when the overall figure for research is decreasing if inflation is taken into account? eta:"Funding for high-quality research into ME is available through existing commitments of HM Government to research and development." from Javid's...

From the Daily Telegraph AstraZeneca vaccine may increase risk of serious neurological condition Scientists believe the jab’s Trojan horse delivery system could be causing a rise in Guillain-Barré syndrome cases BySarah Knapton, SCIENCE EDITOR28 May 2022 • 5:26pm The AstraZeneca vaccine may...

On my facebook page has arrived a link to a UK group for those with vaccine injuries. They already seem to be in touch with a firm of solicitors with a view to investigating legal action. Many of the grievances are around lack of or poor medical care even when diseases such as guillain barre...

@Sarah94 - I think you are wanting links to NIH study.

@Trish- I think this is the article we have been discussing in the APPG thread. https://www.s4me.info/threads/uk-all-party-parliamentary-group-appg-on-me-news-2020-onward.16996/page-7#post-420857 Responses still trickling in - up to 257.

I like to get involved in advocacy but immediately the practical problem comes up if working with others , of how to get involved when my energy is so limited and variable. I tend to do things at my own pace which isn't helpful if it's a team effort with a specific schedule.