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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.

Times article responses 219, mostly supportive

Times article Comments at 183 Suggestions that research should be into cancer instead are there but seem to be very brief by one person . Liz22 17 HOURS AGO He is going to use funds to “further the interests” of a quarter of a million people in the UK who until now have had the dreadful...

Another popular one - responses still coming, now 139 Taliya 11 HOURS AGO The Epsteein Barr virus and Glandular fever are big culprits. The medical profession still have little understanding of what triggers problems with the immune system or what causes autoimmune diseases. The medical...

I used @Lou B Lou 's link in post #113 and got straight through to the article and comments. After a conversation, I think Mr B took up a free subscription offer and logged me into it which is probably why I can access the comments. I think it was a free month offer. Not sure that copyright...

Link to article in the Times. Lots of comments underneath, most ( not all) sensible and some very well informed. Sean O'Neill has engaged. Excellent comment by Nina Muirhead. Are we on the way to changing the narrative? I can only hope...

Abstract from NIH study #871

NIH has published some results of vaccine neuro reaction study. I have a link on my fb page which opens normally but I can't get it across here. I'll try another way and edit it in if successful. Not yet read. edit...

Thanks @Andy for the reminder. I have contacted my MP belatedly. I'm struggling to keep up. I have written to him frequently recently: so much is happpening.

Moved post Brian Vastag has published a series of tweets in last day or so on an article from NIH study Cannot get link onto here nor do I tweet. Will have another go and add it in an edit if I have any success. eta: https://www.acpjournals.org/doi/10.7326/M21-4905. Focus is on medical...