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Not sure if the links have been posted to The Times article: https://www.thetimes.com/uk/healthcare/article/breakthrough-genetic-study-offers-treatment-hope-for-me-patients-3q298ntgt Without paywall: https://archive.ph/BSpnr Apologies if this is a repetition.

This is very significant: a helpful, accurate ME/CFS article in the Guardian written by Ian Sample, who has links to the SMC and has been very unhelpful in his reporting of ME/CFS in the past. Notable that there are no quotes from Carson or any other BPS people – an no mention of BPS ideas. This...

https://batemanhornecenter.org/an-ai-map-of-a-puzzling-illness

This is great news @Andy. Thanks to all the team. Whether by design or good fortune, or a combination of the two, the timing should be ideal for getting it in the media while politicians are on holiday and journalists are desperate for copy. I’m trying to temper my expectations in the hope...

I was hoping you’d be available for the media to contact. Do you know if you’ll have internet on the high seas?

New comment from Ynske Jansen on Hilda’s blog page: https://hbprojecttalk.wordpress.com/2023/11/10/welcome/?replytocom=192#comment-192 Ynske Jansen:

We have an In Memory thread for Isla. Please note: This thread covers issues of death, FII, and the removal of a child from her parents. I’m not sure if this is the right place to post this. I know nothing about Isla’s case, I am just sharing what I’ve read on BlueSky: Sarah Boothby on...

I believe she is also now president of the Royal Society of Medicine. The “there is a way” texts obtained by FOI suggested to me that she might have been looking for a way to change the outcome of the new guideline process. She certainly appeared to have good relations with the person who sent...

I’ve emailed Sean a couple of time this year with an idea for an article I was/am thinking of pitching to The Times about ME/CFS and my letters, but he’s not replied. If anyone else is in contact with Sean, please feel free to bring my letter to his attention. I think I’ve had 3 or 4 letters...

I made this point in a letter to the Times in 2006: https://archive.ph/wxgkO: Plus ca change.

Not sure if this has been posted: #ThereForME response to the final Delivey Plan: https://www.thereforme.uk/p/campaign-update-24-responding-to From the intro:

Remembering back to when I was first unwell, the fatigue felt to me like the type of fatigue you get with flu or intoxication. It is/was different in that it feels much more unpleasant but it is/was similar in that I can always push through, particularly with adrenaline. For me, pushing through...

I am very lucky to have a kind and helpful GP. She phones me every 3 months and if I need to see a GP she will come and visit me at home. I can get to the surgery if my 79 year old mum drives me in her WAV but my GP understands that my infrequent trips out to spend time in nature are hugely...

“The Plan includes some positive first steps in the right direction, which could lead to improvements over time.” I agree that the whole statement is not as strong in its criticism as I would have preferred but I wouldn’t describe it as a rubber stamp. Their statement is similar Sonya’s...

Long Covid Advocacy on BlueSky: “What is striking in the release of The ME Delivery Plan, is the strategic silence of @rthonwesstreeting.bsky.social - no comment - no mention - no press - not even a tweet or RT Yet, it's under his watch, this echo in the void tells us much about the NHS's...

Have they? The statement on their website praises some aspect of the Plan but also expresses concern that it doesn’t go far enough: https://www.thereforme.uk/p/final-delivery-plan-for-mecfs-out: “After years of waiting we’re pleased to see that the Final Delivery Plan for ME/CFS has at last...

“The Delivery plan has been published, however, the Department of Health and Social Care (DHSC) has so far failed to provide a link to the actual Plan!” Typos in the press release. Failure to provide a link to the Plan. No strategic approach to advance research. No commitment to funding etc...

This link says it is published today, 22 July: https://www.gov.uk/government/news/boost-in-support-for-patients-with-chronic-fatigue-syndrome-or-me I’m assuming the organisations that have commented have seen an embargoed copy. Very strange for the government to issue a press release before...

Very disappointing but not at all surprising. This pathetic delivery plan makes the DecodeME results all the more important. If they are as positive as I’m hoping the delivery plan may become largely irrelevant. Thanks for sharing the links. Good report in The Times, apart from the reference to...

There is a DecodeME news alert thread which has been set up specifically so that you can receive an email alert as soon as there is any news: https://www.s4me.info/threads/2025-decodeme-news-alert-thread.44208/ I’m sure the DecodeME team are all working hard to get the pre-print out ASAP, and...