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I too am sorry you have felt like this @Dolphin but I understand it and the wisdom of your decision to step back. I found the following a useful aide memoire from the A for ME article you posted above. Working out your boundaries Boundaries matter and are important in managing all aspects of...

Haven't responses to questions in the H of C about research into ME lately referred to grants being awarded by the MRC? And years before etc etc.....? From article posted by @Eleanor above: "At the MRC, which had a core budget of £602 million in 2025-26, applicant-led research grants, new...

I liked this description. It is so hard to explain that I can't arrange an appointment for a specific day because I won't have recovered from one three days before. It's completely incomprehensible to most people. "First of all, the problem with fatigue in ME is not up front, in how much you...

Am glad that Forward ME is alive and contributing. There have been some losses of personnel but pleased to see you there @Jonathan Edwards. The Countess of Mar is retired and Janice and Bill Kent of ReMEmber also retired and ReMEmber closed down I think. Charles used to attend regularly and...

It's also relevant to consider the opposite, what situation precedes an improvement in capacity. I am mostly severe, either bedbound or recliner bound all the time at home although I can walk from one room to the next. I use a power chair outside home but, apart from hospital appointments, am...

I was diagnosed with a " glandular fever type virus" in 1986 following a blood test at my GP's which had to be repeated weekly then fortnightly for about 3-4 months. The haematology department at the local hospital then called me via GP for a spinal tap. After the spinal tap, I was discharged...

Thank you for covering page 19 @bicentennial. I spent ages trying to copy it in but could be fingerprints. I have had issues with fingerprints for a while, but last June for the first time, I wasn't allowed into NYC at security in Brooklyn but was taken to a side room by a very puzzled border...

https://meassociation.org.uk/wp-content/uploads/2026/01/Annual-Report-Health-and-Social-Care-MEA-2025.pdf Have we reviewed the above Annual 19 page Report published just before Xmas ( to judge from its concluding with a wish for a happy Xmas to those who observe the holiday season), written by...

There are to be changes in some areas where it is currently legal to part park a car on a pavement. This obstructs the pavement preventing people in wheelchairs, those pushing pushchairs or being assisted by a guide dog from getting past the obstruction. This was a brief item on this evening's...

Today at 4.30 - Rosetta Stone study Today on Radio 4 BBC Inside Science at 4.30 pm, the ME Association's Rosetta Stone study, our largest ever research project which was announced in December, may be featured! If you'd like to tune it, you should be able to watch it via the link here after the...

Today at 4.30 - Rosetta Stone study Today on Radio 4 BBC Inside Science at 4.30 pm, the ME Association's Rosetta Stone study, our largest ever research project which was announced in December, may be featured! If you'd like to tune it, you should be able to watch it via the link here after the...

https://www.actionforme.org.uk/written-questions-about-me-submitted-to-parliament-have-been-answered/ Action for ME on fb today.

So, how are we going to push things forward? Mr B wrote to the MRC and NIHR just before the " Showcase Event" and eventually received a reply from someone at the MRC, nothing from NIHR. He had asked about the meeting being recorded for circulation and it was indicated that they " would publish...

I'm not sure of Parliamentary protocols but it seems that questions about ME, both severe and non severe, are being placed almost weekly. I am glad of the exposure this brings and that members of the Government are being required to deliver an answer, mostly out of nothing actually being done...

In post #16 on this thread, @forestglip posted charts of the treatments patients with ME and long covid found most useful. Numbers one and two for ME are enoxaparin ( a LMW heparin) and saline and interestingly, we have discussed experiences of both these as useful on the forum before. I have...

We would have a problem with BACME staff digging in harder because their skills would lose value and they lose the work they have been doing comfortably for many, many years. They appear very well organised too with new proposals printed and coming out on the day in August that the NICE...

I have a machine which moves lymph around the body. It's called a lymphapress and consists of the machine part which is small enough to be placed on a side table ( but very heavy) from which extend, via a plug, two long leads which are fixed to a body bag ( edit: with separated legs) into which...

I have a clear recollection of a clip provided ( I think but a not sure) by the MEA, being read by an AI source pronouncing ME as me several times. It made nonsense of the piece. Fairly recently, maybe last year. There was a brief discussion about it. Someone provided a better "bot" source...

Thank you @Yann04. Your schedule is a real indicator of how bad sleep problems can get in ME. Sleeping in order to eat adds such pressure. Again last night, I didn't sleep until 6am and that was with trying both our bed and then my recliner to try and trick my body to relax. At 6.30 I was...

Am struggling again with sleep. It seems an intractable problem. Not sleeping till after 6am. I think I'm going to give daridorexant another go. Am in PEM too but don't think I will get out of it until I start to sleep. I think I will look back at my instructions from Dr Bansal and titrate the...