She was asked about “Post Exertional Malaise”... 2/n
I held back from commenting overnight to chew it over, but I am still saddened by comments during a presentation I attended yesterday by Prof @trishgreenhalgh & @CIHR_IMHA.
The topic was “LongCovid, Myalgic Encephalomyelitis & More”.
I quote from memory.
1/n
#MECFS #LongCovid
Have you registered for IMHA's next webinar on Long-COVID? Guest speaker Professor Trisha Greenhalgh.
— CIHR-IMHA Community (@CIHR_IMHA) January 12, 2021
When? Tomorrow: *Jan 13th.* 12pm ET
A few spots are left, but going fast!
Registration required: https://t.co/T4PbWNA35Y@KarimKhan_IMHA @CIHR_IRSC @trishgreenhalgh pic.twitter.com/xlWKi4QKF1
She was asked about “Post Exertional Malaise”... 2/n
@Trishgreenhalgh acknowledged the new @NiceComms advice for LongCovid was planned to complement... 3/n
Then it all went wrong.
@TrishGreenhalgh noted the changes to the @NiceComms guidance for ME/CFS, removing support for Graded Exercise Therapy / Cognitive Behavioural Therapy. She noted there is a big debate about this. 4/n
https://t.co/0enH8TFPoe
However Prof Greenhalgh then went off-piste.
5/n
6/n
Aside from ethical issues of naming patients, this is an n=1 case.
7/n
Furthermore, @TrishGreenhalgh failed to mention Prof Jonathan Edwards’ (not on twitter) Expert Testimony.
8/n
His testimony can be found here:
https://t.co/qLhsBJ4Bcu
9/n
I find this ill-befitting of an academic of her standing.
10/n
It puts her view in the field of politics not medicine.
That opens her to political-style criticism, which would be a shame.
11/n
We must play the ball, not the player.
12/n
Perhaps that is why, between 2015-2016 only £5m / year was spent on researching the condition.
Or aproximatly £0.35p per person, per year. Ouch.
https://t.co/TUPEiSCLZq
13/n
It really hurts.
And how ‘aggressive’ were these patients? Is this tweet aggressive? Will I be blocked and blamed?
14/n
I have a fatiguing gut condition and was mis-diagnosed with ME/CFS 4 years ago. I walked 6Km / day.
A specialist ‘undiagnosed’ me as I did not have PEM.
But in 2005, could I have been eligible for a GET study, and might have felt better after exercise.
15/n
She likes to go for walks, and exercises when she can. Had she taken up the offer to participate in a trial, she may have improved too.
16/n
I also experienced gas-lighting from the 20+ docs who told me it was all in my head. Thankfully I now have much better medical support, but many struggle.
17/n
The condition needs research, and that starts with belief, and develops with high-quality, objective science.
END/
I am actually a big supporter of Prof Greenhalgh’s work. Masks are good. So is good patient care.
I have no malicious intent, but it is right to challenge bad pronouncements on this issue.
If you think I have got it wrong, please let me know.
Please challenge misinformation about on ME/CFS, but accept that even great people make mistakes. Forgive.
More from Education
Dear @Ofstednews
*Re: Teachers have passed the test the Government have failed*
My letter in response to @GavinWilliamson's request for parents to complain about online provision of learning during global pandemic. It might appeal to parents & #EduTwitter alike. THREAD⬇️
I would like to echo the recent recommendation of my MP, who I understand has education as one of their priorities.
They lead with religious and political faith, and I'd like you to lend from their methods of applying faith over fact, if you could.
You see, I have faith in schools communicating clearly, consistently and safely as the facts have demonstrated they can. Unlike the cabinet.
Schools have acknowledged the fear and confusion communities have suffered when this government has failed to deliver clear and consistent messages that lend to 'common sense'.
This, despite the fact their 'common sense' pleas for the contradicting that of their own dangerous behaviour.
*Re: Teachers have passed the test the Government have failed*
My letter in response to @GavinWilliamson's request for parents to complain about online provision of learning during global pandemic. It might appeal to parents & #EduTwitter alike. THREAD⬇️
I would like to echo the recent recommendation of my MP, who I understand has education as one of their priorities.
They lead with religious and political faith, and I'd like you to lend from their methods of applying faith over fact, if you could.
You see, I have faith in schools communicating clearly, consistently and safely as the facts have demonstrated they can. Unlike the cabinet.
Priti Patel announces even more deaths than I was expecting: "Three hundred thousand, thirty four, nine hundred and seventy four thousand"
— Parody Boris Johnson (@BorisJohnson_MP) April 11, 2020
That's almost twelvty ten squidillion.#COVID19 #pritipatel pic.twitter.com/Jf7a5E7BfI
Schools have acknowledged the fear and confusion communities have suffered when this government has failed to deliver clear and consistent messages that lend to 'common sense'.
This, despite the fact their 'common sense' pleas for the contradicting that of their own dangerous behaviour.
We've been falsely told 'schools are safe', 'don't drive community transmission', & teachers don't have a higher risk of infection repeatedly by govt & their advisors- to justify some of the most negligent policies in history. 🧵
data shows *both* primary & secondary school teachers are at double the risk of confirmed infection relative to comparable positivity in the general population. ONS household infection data also clearly show that children are important sources of transmission.
Yet, in the parliamentary select meeting today, witnesses like Jenny Harries repeated the same claims- that have been debunked by the ONS data, and the data released by the @educationgovuk today. How many lives have been lost to these lies? How many more people have long COVID?
has repeatedly pointed out errors & gaps in the ONS reporting of evidence around risk of infection among teachers- and it's taken *months* to get clarity on this. The released data are a result of months of campaigning by her, the @NEU and others.
Rather than being transparent about the risk of transmission in school settings & mitigating this, the govt (& many of its advisors) has engaged in dismissing & denying evidence that's been clear for a while. Evidence from the govt's own surveys. And global evidence.
Why?
Questions have to be asked about the evidence Jenny Harries gave to the Education Committee today about the risk to teachers.
— Adam Hamdy (@adamhamdy) January 19, 2021
Was she aware of this data?
If not, why wasn\u2019t she properly briefed?#COVID19 #schools https://t.co/4wa1PyAJld pic.twitter.com/eqFjaA1zYC
data shows *both* primary & secondary school teachers are at double the risk of confirmed infection relative to comparable positivity in the general population. ONS household infection data also clearly show that children are important sources of transmission.
Yet, in the parliamentary select meeting today, witnesses like Jenny Harries repeated the same claims- that have been debunked by the ONS data, and the data released by the @educationgovuk today. How many lives have been lost to these lies? How many more people have long COVID?
has repeatedly pointed out errors & gaps in the ONS reporting of evidence around risk of infection among teachers- and it's taken *months* to get clarity on this. The released data are a result of months of campaigning by her, the @NEU and others.
Rather than being transparent about the risk of transmission in school settings & mitigating this, the govt (& many of its advisors) has engaged in dismissing & denying evidence that's been clear for a while. Evidence from the govt's own surveys. And global evidence.
Why?
