#MEAction Network UK Rt Hon Andrew Stephenson MP Can you name the specific funding demands of the main 2 charities & when they started making them? If Andrew Pendle is the minister he really needs to understand that with severe ME i can’t swallow to sustain life or have visitors vs thinking we are missing out on football trips
Efthymios Kalafatis “Conclusions: ME/CFS subjects took an average of about two weeks to recover from a 2-day CPET, whereas sedentary controls needed only two days. These data quantitate the prolonged recovery time in ME/CFS “ ncbi.nlm.nih.gov/pmc/articles/P…
Kerry Newnham Efthymios Kalafatis The term PEM is being hijacked for conditions that are not PEM. If all those medical conditions included PEM then it's extreme seriousness would have been investigated in those conditions long before now. How many more ways to disappear ME?
Kerry Newnham #MEAction Network UK Sajid Javid I know they weren’t on Twitter/X at one bit but I will check - thank you
Efthymios Kalafatis Kerry Newnham This will take a lot of time and money, and in making the claim that PEM (or really PENE) is not unique to ME (without appropriate objective evidence), those who do so are attempting to push the burden of proof onto the already over-burdened field of ME research.
This is why
Kerry Newnham #MEAction Network UK Sajid Javid I’ve not even bothered to send mine an email. Takes at least 3 weeks for them to reply to anything I send them!
Kerry Newnham That is from the long covid awareness day flyer I'm adapting. Many people are developing Me/cfs from covid so I left it on there.
dizzy Marlcliffe Kerry Newnham I'm trying to stick to ME figures for this one. I don't know how many of the 2m are ME. The Long covid awareness day one had the lc ons figures. I can figure out how to relate this to Long covid. But I don't know how much I want to link this to the pandemic when ME predates it.
Billboards for LC/MECFS Kerry Newnham That's fair, but I don't think you can use the phrase 'mass disabling event' without referencing the impact of long covid. Is there a similar attention-grabbing headline that's commonly used by the various ME organisations?
Kerry Newnham Billboards for LC/MECFS Or if you are going to say 'mass disabling event' I think you need to make it clearer that this is because of long covid - maybe reference the 2million cases referenced in yesterday's ONS report?
Aftab Khan, MD Post 1916 flu
post polio
post sepsis
ME/CFS - post flu, mumps, EBV etc
Post SARS 1
Post ebola syndrome
But yeah the medical profession could have no inkling That there might be a post/ long covid.
Kerry Newnham Efthymios Kalafatis This is why I think PENE is a much better descriptor of our experience post exertion. Neuroimmune exhaustion is way more accurate, as it encompasses all the swollen glands, light and sound sensitivity, etc.
Matthew Dalby NHS England How can we trust NHSENGland at all when their website is still resolutely tiredness and CBT.
Rt Hon Andrew Stephenson MP please understand that you misframed the parameters of ME/CFS yesterday
25% are severely affected - house or bedbound, many for years.
severe ME means unable to have visitors, share a family Christmas, go outside, wash regularly, read a book, eat a meal *even*
