ME (chronic fatigue syndrome) affects at least 250,000 people in the UK & can be a debilitating condition. @SajidJavid recently met experts & charities to discuss how we support biomedical research to improve understanding of ME/CFS. @LucyChappell2 @SonyaChowdhury @actionforme

Jun 17, 2022 · 11:30 AM UTC

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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Hopefully this leads to massive reforms. The UK bears unique responsibility, having promoted the failed ideological model of "chronic fatigue", caused massive harm around the world. Harm that is ongoing, so urgency is badly needed. End this manufactured dystopian nightmare.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
The ME/CFS community has faced years of medical neglect and gaslighting, and now the same thing is happening with #longcovid. How can you say this while you remove masks in healthcare? This makes it impossible for the vulnerable to access medical care. Or is that the plan?
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Replying to @DHSCgovuk @DoctorsWithME @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Thank you! Please involve Dr William Weir, Dr Nigel Speight, @DoctorsWithME @PhysiosForME @Invest_in_ME @tymestrust @StripyLightCIC and the 25% group representing severe patients & patient advocates such as @ValeriEliotSmit @MEFoggyDog & @adambeyoncelowe
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Thanks to covid, ME now affects significantly more people; 50% of those with long covid now have ME (which actually stands for Myalgic Encephalomyelitis). It’s a condition triggered by viral infections & other immune mediated reactions. We’re in a mass disabling event.
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Replying to @DHSCgovuk @TimesONeill @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
ME is Myalgic Encephalomyelitis not chronic fatigue syndrome after 40 years you still can’t get even the basics right.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Looking forward to seeing some quick wins. Above all, clinicians must be educated about the severity of this condition so patients will no longer be misdiagnosed, or (mis-)treated with harmful exercise therapies or gaslit through various perversions of CBT.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
We need: SPECT scans Microclots testing Tests for circulating viruses. Organic acids tests Mast Cell Tests Some need upright MRIs to check fir Craniocervical instability - &, perhaps appropriate surgery.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
This video as a PR opportunity is disrespectful to the generations of ME patients who have lived and died without recognition or treatment. This research initiative is welcome but must be: a) scoped in context of ME's long torturous history b) approached with great sensitivity.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Thank you - people are missing @Invest_in_ME @TheQuadram @CardingLab have much experience to add. IiMER have been holding high quality Colloquiums & Conferences for fifteen years. The Carding lab have planned research, Prof Carding is fundraising himself! quadram.ac.uk/blogs/prof-car…
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Is there a full record of this event please? Who attended, what was discussed, and most importantly what was agreed, what were the action points and timescales for specific actions agreed? We need concrete actions, not just discussions.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
@dittmarsabine @Karl_Lauterbach Hier mal was zum nachmachen. Was fehlt ist jedoch das #MECFS auch häufig als Folge einer #SARSCoV2 Infektion auftritt (#LongCovid).
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
You forgot to include the millions who now have #MEcfs from Covid.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
The reason the ME/CFS field has barely progressed in 20 years, explaining why you have so few active ME researchers on the panel, is because since 2002 and by choice, the only significant #ME biomedical research @The_MRC has funded has been two small grants in 2012 & 2020.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
To echo many others, 250k has been the estimate of # affected for many years. Likely vastly undercounting the actual number.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
This should be done in every country. EU Comission should take action and stop the harm of ME and #LongCovid patients #EncefalomielitisMialgica in so many countries like Spain. You are doing a great job!! We beg for the implementation of NICE guides of these diseases in Spain!!
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Its not chronic fatigue syndrome its myalgic encephalomyelitis, you can't even get that right for gods sake.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Are there any minutes please?
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
It would be my wish that any new treatments and clinics are delivered by the NHS and not by private healthcare. This is not an area to try and do things on the cheap or place trust in accountants.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
'Met experts and charities to see if he can make money out of it'. Fixed it for you.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Yes for quick wins, ie using already available medications/treatments.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Long Covid is similar but you’ve allowed the virus to run rampant and thousands are suffering debilitating and disabling symptoms . Have you visited one of those centres ?
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Can it please be shared what this “process“ will involve, why the lack of openness so far & what we can expect going forward. Many are just hanging on & want to know what’s being planned for our lives & how, because succesive past “deliveries” have fallen way short
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
@Karl_Lauterbach @dittmarsabine Take a look at your colleagues. Do they know more than you know? NO. But they care, you not! Pls @DHSCgovuk @sajidjavid explain your actions and motivation to our german government.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
2 million long Covid, so that's were the missing workers are.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Sajiv - Lucy - our letter has to date been ignored. What is the reason? A solution could come from anywhere so why rule Alternative Research out before even asking what we can contribute?
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Speaking of chronic illness: The next COVID wave is here. The NHS is running on empty, and now it’s running blind; the data should be ringing alarm bells. - 2 million people living with #longcovid in the UK, up from 1.8m in May. And counting… pmp-magazine.com/2022/06/17/…
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Great start. 👏
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
P.S. I think more women than men are said to have 'ME/CFS' but nobody talks about the real possible causes of neuro/brain problems in women that must have many causes; women use healthcare & meds more - I wonder if this has anything to do with it = too 'controversial' I expect?
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
I mean he does know that a lot of the 2 MILLION people with #longcovid are now sufferin ME-like symptoms doesn't he? and this new #covid wave we are in (4th THIS year) is making hundreds of thousands more...... #ResignNow #CovidIsntOver
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
You forgot to mention it is sometimes fatal.
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Replying to @DHSCgovuk @sajidjavid
I've got chronic fatigue... caused by the Tory Government. Tired of their bullsh*t....they hold the cure in their hands...by removing Boo-ris!!!
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Replying to @DHSCgovuk @sajidjavid
Why aren't people with ME on the vulnerable list or cev list for Covid vaccines? We are at increased risk of long Covid.
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
P.P.S. Also if a man & a woman went to GP with same symptoms (that could be fobbed-off as 'ME/CFS' or anxiety/depression) I bet the man would be examined better & symptoms taken more seriously? Medics cause bias & prevent real true info/data because of their mega biases & beliefs
Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
First & foremost: stop grouping such a divers range of symptoms together & plonking them all under an ignorant umbrella called ME/CFS; I can't believe medics still do this - surely some must refuse to go along with this dangerous nonsense that causes mega neglect & discrimination
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
Today we tried to fight for our rights #EncefalomielitisMialgica but how can we if we are sick? Who will help us? When is this injustice going to end? In Spain there is not an oficial ME medical guide yet.Same for #LongCovid . Please help us to be seen! We're being forced to work
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Replying to @DHSCgovuk @sajidjavid @LucyChappell2 @SonyaChowdhury @actionforme
CFS, long covid, Fibromyalgia, Rheumatic disease are all a Chronic Inflammatory Response to something which the body considers a biotoxin. Or has no ortholog for ie foods (phytates) , mould, virus exposure, tick bites. Zinc is the key.
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