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"Together with the MRC, we are actively exploring next steps for research in ME/CFS, and we will outline in the delivery plan further research actions and the additional support we will offer to the research community to increase the volume and quality of applications. This includes a new...

FWIW Román Rocha Lawrence Director of Research and Development at ELAROS. Research Fellow at The University of Leeds.

I don’t think a lot of people with M.e realise that we’ve been through this pretty much all before. And even the first time was supposed to be about Adressimg decades of hostility, harm, bad care and lack of progress. The funding wasn’t given for research, the MRC ignored the recommendations...

The Liberal Democrat’s have written to the health secretary again.

One of the criticisms of the 2002 chief medical officers report was the lack of accompanying money for research, despite the advice for a program of research on all aspects, including commissioned. Unfortunately the MRC response to the commissioned bit was “no” and the charity response was...

Looking at the BACME guide for severe ME it Says a member of the working group was “Ms Mary Jane Willows, Chief Executive AYME and BACME Executive (retired)”.

The afme initiative is re. infrastructure and totals £850 000 vs the £50m of ring fenced funding tos et up a research and clinical trials program that long covid was Given - part by Sajid Javid, ironically, at the wave of his hand. We should have had the same, immediate resources for research...

On Facebook, Dr Charles Shepherd has answered some of the what ifs, says sent a critical letter in response & orgs will discuss what to do next.

I had mild- mod teen onset. Sleep immediately went light and unrefreshing, became much more disturbed by street lights or noises. Standard Medication was required for insomnia 2 years in as health declined. Insomnia vs somnolence proplem. Unable to sleep without meds as wired presentation...

Whilst I'm constantly negative about the responses from Ashley Dalton, She’s posted on Twitter regarding the Ass dying debate she has mastitic cancer. This is obviously a very sad thing for her and a v tough thing to go through. I think from our perspective it’s a negative because there is...

The elephant in the room is that the CMO report of 2002 & Gibson report 2006 made recommendations regarding education and so on ,so the fact that gvt, nhs & medical schools has finally bothered to take M.e seriously and act to ensure that those providing medical care & research in the UK...

this is happening for Parkinson’s, Apparently this was news in March 2025 https://www.parkinsons.org.uk/news/new-centre-accelerate-parkinsons-research https://www.ukdri.ac.uk/news-and-events/uk-dri-and-parkinsons-uk-join-forces-establish-pioneering-research-centre “Marking a pivotal moment...

I’m not begrudging Parkinson’s at all, and completely sympathise with your person who suffered. Late stage Parkinson's isn't something I know much about it but if it's associated with dementia then that's terrible. But I’m saying that m.e is being treated as less worthy and in my opinion is...

Meanwhile , this is happening for Parkinson’s, which already has some treatments and large public & private investment, it affects half our numbers and an older demographic.. The MRC apparently are the main funders of the DRI...

The MEA ais quite rightly being challenged about what they’re going to do about this and I don’t think they mean just in terms of the delay but in terms of the absence of anything to deliver anything for this misrepresented, harmed and neglected community. I don’t think that type of challenge...

Fibromyalgia s finally getting some proper research https://www.liverpool.ac.uk/research/research-themes/living-well/unlocking-mystery-of-fibromyalgia/ "Fibromyalgia (FMS) is a chronic pain condition affecting more than 2% of the UK population, characterised by widespread pain, fatigue and...

One fun thing to do is to question the validity of your doubting relatives when they get illness or pain - so if your mum says oh I’ve hurt my arm or your dad says oh I’m going down with an infection you say oh I don’t think you are, I think your exaggerating, have you considered if it is your...

Maybe of relevance https://neurosciencenews.com/mental-exhaustion-neuroscience-29361/ Summary: A new study reveals how the brain responds to mental exhaustion, identifying two key regions—the right insula and the dorsolateral prefrontal cortex—that become more active as cognitive fatigue builds.

I gradually loose sensation in my legs the more i cognitively exert. And at best I usually have patchy awareness of my body eg my left leg awareness decreases the further towards the foot it goes. There’s a medical term for that prioception. When I've met GPs, they often start would it be...