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Long Covid Groups on Twitter have picked up on this, so I expect they will be contacting them.

Maybe we should have joined Forward ME! Only joking I know we don't have the capacity. I do wonder who is going....

AfME produced this report following FOI requests to all ICBs and NHS Trusts: https://www.actionforme.org.uk/uploads/images/2023/05/Action_for_M.E._-_FOI_report.pdf

I have seen posts from her Mum recently on Dr HNG's FB group. Ella is still in hospital, but being treated better. I think this has been due to a different ward manager. Don't know if it is a different ward. She also mentioned how helpful Sonya C from AfME had been.

From the most recent MEA email: The ME Association: Diet and Nutrition in ME/CFS and Long Covid Diet and Nutrition was written by Sue Luscombe, Honorary Diet and Nutrition Adviser to the ME Association “The ME Association is very grateful to Sue Luscombe for helping to produce this new...

Has there been a good response on mastodon, I'm not a member. Both S4ME and the MEA FB sites have numerous posts of people who are very concerned about the pointlessness (not sure that's a word!) Someone on MEA FB linked to the S4ME FB site.

£335k being spent on this and yet extension of Danny Altmann's immunology study of pwLong Covid plus a cohort of pwME seems not to have been funded. The original study was a bit over £525k

"Dr Stewart qualified as a medical practitioner in 1976 from Guy’s Hospital London and became a Member of the Royal College of Physicians in 1979. He established his own independent medical practice in Sussex and in London in 1981 specialising in nutrition as well as homoeopathy and became a...

BACME 2024 Conference MAY 16 @ 9:00 AM - 5:00 PM £75.00 – £95.00 We are delighted to announce the BACME virtual clinical professional conference “Delivering NICEly ME/CFS” which will be delivered on Thursday 16th May 2024 via Zoom. The conference will run from 9:00 am through to 5:00 pm...

@Adrian does the above response, especially the final paragraph below have any relevance to discussions in RWG? "In the interim delivery plan on ME, the Department recognised that there has been a relatively low amount of biomedical research funded on ME, compared with disease burden. The NIHR...

So sorry to hear that you've experienced this as well.

It is not only young women and girls who have problems with eating, due to the severity of their ME. A male in his late forties was sectioned and treated as if he had anorexia nervosa in a psychiatric hospital. He had previously been to his GP, because he was having issues keeping enough food...

This one made me laugh: "Mrs Jayne Woodcock Pyscologist Biography to follow" ETA: It was the spelling of her role that amused me. Yes I know I'm just a big kid, but some days you just have to take the laughs where you can.

This is really dreadful news.

They now call their "service": Specialist Treatment for Children & Young People with Fatigue https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/index.asp?menu_id=1

Unbelievable, yet again.

This is needed so much

Could this be the article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10785980/ "World Psychiatry. 2024 Feb; 23(1): 53–54. Published online 2024 Jan 12. doi: 10.1002/wps.21151 PMCID: PMC10785980 PMID: 38214630 Functional neurological disorder: defying dualism Jon Stone, 1 Ingrid Hoeritzauer...

Absolutely @NelliePledge, I thought that they could only help with sleep apnoea, restless legs etc. When they then recommended the Sleepio App and the following book, I was not hopeful. Overcoming Insomnia and Sleep Problems: A Self-Help Guide Using Cognitive Behavioral Techniques Paperback –...

Interestingly, the sleep study and follow-up was at Guy's, all part of the "King's" network.