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Post copied, and following posts moved from Rosetta Stone Study: £1.1m awarded to investigate links between ME/CFS and Long Covid ------------ I’m pretty sure that’s what they did argue in one of their public financial accounts, but i cannot remember which one. My related views - It seems to...

Coming from a slightly different angle, I’ve always said sick, not tired. It's one of the reasons I reject the Chronic Fatigue syndrome framing. I didn’t go to my doctor after a 2 weeks nasty illness saying I’m really tired, even if some do, I went to him after I’d failed to recover as a 16 year...

Is this just for that specific region or can I recommend my gp from the Waveney region? . Waveney CFS service just has a GPSI for diagnosis only, and not ongoing medical care of the severely affected, so I’m in the hands of a gp who probably knows nothing.

In the UK, From what I saw on Facebook, although, led by patients doing the work, The ME association went back to the topic of post-mortem research & having an arrangement with Manchester to set them up as required, after shelving it due to costs, they haven't actually done any for various...

I would like to See Post mortem research and more on the advanced stages rather than ticking the “severe m.e” box by including us in studies that are primarily designed for the whole community vs exploring what can go wrong as things snowball and persist for a long time.

Loss of neurons in hypothalamus according to Google AI.

How is expertise developed? They have to start somewhere and should have started in 2002. They did have the inpatient unit at queens that although had significant issues did have capacity to take in, test and support but it was inadequate for very severe ME as the nhs side was a mixed ward of...

Why wasn’t this consideration done during the DHSC delivery plan 3 years of discussions so it did actually deliver something?. The tiny gestures in the DHSC delivery plan - a showcase, some nhs modules, tiny amounts to repurpose drugs could have been put together in an intense weekend -...

It's totally unacceptable to present reheated leftovers ie “showcasing research” which has all the sincerity of a show trial, and was last decades "news" or rather empty gesture, as a new strategy. This is how to shaft the community in broad daylight whilst smiling 101. Only possible because...

, This is woefully inadequate. MRC have been making these noises along with tiny gestures for decades. They're not working with us or researchers (except Professor Chris Ponting), they're over riding us, ignoring our pleas, refusing most research proposals, doing nothing in response to...

This was targeted at the MRC though. I do think worthwhile for government to be shown comparison figures, but I can’t believe such discussions didn’t happen at the round table around research ie I think they know .

On Action for ME Facebook

Yes. But... Sonya Chowdhury Action for ME as part of the CMRC was asked to do a comparison review back in 2016. It made no difference, MRC response was to say they would take another look at their highlight notice. It was presented on for ten minutes at the CMRC conference of 2016 on YouTube ...

Can we have some type of pushback against the expedient erasure of severe m,e? It’s possible they want to provide only (interesting wording) “advice on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), & management strategies.” for the mild-moderate who can get out to...

The ME association say “So the fight goes on…“ The MEA and I have very different views on what fight means. After the 2002 chief medical officers report Dr Charles Shepherd wrote To the MRC or had a meeting about the recommendation in the 2002 chief medical officers report for Commissioned...

So this app , is for those who unlike People with any other potentially serious illness, are not provided with nhs care and for that privilege they want to charge a subscription fee for accessing the toolkit.

regarding the Westminster debate the APPG & action from Me should not be framing their response to the failed delivery plan as “it‘s a welcome step”. It facilitates the government to take this completely unacceptable position “the beginning, not the end” and that not all proposals were included...

The ME association are just limping on. No enthusiasm shown for the German major funding, no pushback vs the delivery plan, indifference regarding any political challenge or solution. So this is what they are excited about - more collaboration, promotion of the great age of the app and doing too...

Why would there be treatment let alone cures for ME/CFS on a <$15m/ year annual US research budget …

. This takes a critical view of the study. FWIW no medication makes me feel better and function more as a profoundly ill patient, but both melatonin & zopiclone, probably for different reasons do. I have suspected neuro-driven central sleep apnoea, so am unable to tolerate any standard sleep...