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MRC rep. spent a whole hour at CMRC conference 2016 lecturing on how to write a good application. They've always blamed that. Sonya Chowdhury was given 10 minutes to present on the CMRC commissioned report into UK and global ME/CFs research funding.

A reply to long covid kids from Ashley dalton containing statements regarding ME/CFS funding Response from Ashley Dalton MP received 24th April 2025. https://www.longcovidkids.org/post/reply-from-ashley-dalton-to-our-open-letter-dated-26th-march-2025 which I think is an utter p*** take...

Context from Cort Johnson . from what I can see m.e orgs have worked on the long covid moonshot, which I think only addresses m.e in terms of it being sometimes studied in comparison with long Covid, not in any other way. Were they calling for $1 billion per year for aclong Covid...

the problem there is people in power making assumptions, based on overwhelming prejudice to female patients. I concur regarding Stephen Holgate. I’ve also not seen explanation of why Stephen Holgate chose To do a JLA PSP for his field asthma, immediately, as became available in 2004 and yet for...

This type of endeavor would in my opinion be about twenty years too late. They called this a delivery plan , 23 years after the 2002 chief medical officers report was ignored and patient interpretation of that, quite reasonably was a gear change , and delivery of essentially justice with...

what is the argument used by them to justify thempacifying long covid sufferers By pointing to the £40m dedicated funding &2 funding calls, including clinical trials and then turning to the ME/CFS community and claiming they could not possibly do anything similar please? Surely any excuses...

Beyond the letter, what is to be the pressure? Does it have a chance, this late in the day, of influencing the DHSC delivery plan surely being finalised now? the previous ring-fenced funding for m,e was a small one off, called a “small start” by sir Hugh parry. The MRC refused to sustain it...

I welcome a solid proposal to the MRC after the MRC giving us the run around for years. However, It would only address decades of underinvestment if it a) asked for sizeable sums & b) included neuro/sensory/ cognitive research which a) is currently unspecified? b ) this doesn’t The #Thereforme...

I think the severe figures , if 25%, are way more than 10 000. How do you derive those figures? It seems to be based on the lowest estimate of severe ME 10% of the lowest estimate of ME/CFS 100 000? However it’s going to be primarily in the very severe/ bordering on extreme cases ,and even...

It probably wouldn’t be recorded as few with severe ME have specialist care, or research, GPs never view or interpret m.e medical terms. In my view my own experience of limb and distressing muscle tightness & tensions , especially after the limb js used or stretched is more than immobility eg...

for me the issues are not just arising from immobility, but I think hyper Tone, spasticity, the type of issues seen in neurological conditions. I get a lot of muscle issues all over, including facial grimaces and the bent arms, claw hands, we see when people have neuro injury but it's my ankle...

I'm confused about this study. Does it actually count only those with post-exertional malaise m.e versus the wider Chronic Fatigue syndrome / post viral fatigue syndrome that drs might have diagnosed via wider criteria pre the NICE guidelines 2021? If this is including a wider diagnosis then...

Before the mental health platform formation, The ME association had put in its DHSC delivery plan proposal something like the dementia platform that was set up in 2014. https://www.alzheimersresearchuk.org/news/dementias-research-platform-uk/

Does the fact this is being put out as a campaign after the March the delivery plan was expected to publish and several months after these behind the scenes moves/ discussions, indicate that the general response has still been negative which is why patient pressure is now being asked foror is...

From the PSP top 10 website Looking at the psp document regarding the hubs, this priority doesn't have a place? i wonder how was it decided to omit this priority from the plan? Because we have so few neurologists interested? It is probably the area of Myalgic Encephalomyelitis research that...

it has been the brazen 2 tier efforts for m.e compared to long covid - ie don’t you worry, ofcourse we are taking long covid seriously and as proof of this ww point to the fact we have invested this much… for This program including clinical trials etc that has, to put it mildly taken the...

I would like to Know how much funding is being asked for over the 5 year period, this type of £20m or would that just be the set up starting costs?

How much funding are you hoping / asking for?

To be honest it sounds very m.e type but no post-exertional malaise mentioned so unclear. Everything else I’ve heard of in severe me. I have contractures in my ankles and know someome else with LC/ME in their knees and we would tbf be devastwd if surviving the horror of severe ME amd Hanging on...