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.
A list of cool websites you might now know about
A thread 🧵
1) Learn Anything - Search tools for knowledge discovery that helps you understand any topic through the most efficient
2) Grad Speeches - Discover the best commencement speeches.
This website is made by me
3) What does the Internet Think - Find out what the internet thinks about anything
4) https://t.co/vuhT6jVItx - Send notes that will self-destruct after being read.
A thread 🧵
1) Learn Anything - Search tools for knowledge discovery that helps you understand any topic through the most efficient
2) Grad Speeches - Discover the best commencement speeches.
This website is made by me
3) What does the Internet Think - Find out what the internet thinks about anything
4) https://t.co/vuhT6jVItx - Send notes that will self-destruct after being read.
OK I am going to be tackling this as surveillance/open source intel gathering exercise, because that is my background. I blew away 3 years of my life doing site acquisition/reconnaissance for a certain industry that shall remain unnamed and believe there is significant carryover.
This is NOT going to be zillow "here is how to google school districts and find walmart" we are not concerned with this malarkey, we are homeschooling and planting victory gardens and having gigantic happy families.
With that said, for my frog and frog-adjacent bros and sisters:
CHOICE SITES:
Zillow is obvious one, but there are many good sites like Billy Land, Classic Country Land, Landwatch, etc. and many of these specialize in owner financing (more on that later.) Do NOT treat these as authoritative sources - trust plat maps and parcel viewers.
TARGET IDENTIFICATION AND EVALUATION:
Okay, everyone knows how to google "raw land in x state" but there are other resources out there, including state Departments of Natural Resources, foreclosure auctions, etc. Finding the land you like is the easy part. Let's do a case study.
I'm going to target using an "off-grid but not" algorithm. This is a good piece in my book - middle of nowhere but still trekkable to civilization.
Note: visible power, power/fiber pedestal, utility corridor, nearby commercial enterprise(s), and utility pole shadows visible.
If I did thred on finding/acquiring decent raw land would that be something pepo are interested in
— Ovcharka (@ouroboros_outis) January 18, 2021
I think I know a bunch of weird tips/tricks for selection at this point that it might help u guys, lemme know
This is NOT going to be zillow "here is how to google school districts and find walmart" we are not concerned with this malarkey, we are homeschooling and planting victory gardens and having gigantic happy families.
With that said, for my frog and frog-adjacent bros and sisters:
CHOICE SITES:
Zillow is obvious one, but there are many good sites like Billy Land, Classic Country Land, Landwatch, etc. and many of these specialize in owner financing (more on that later.) Do NOT treat these as authoritative sources - trust plat maps and parcel viewers.
TARGET IDENTIFICATION AND EVALUATION:
Okay, everyone knows how to google "raw land in x state" but there are other resources out there, including state Departments of Natural Resources, foreclosure auctions, etc. Finding the land you like is the easy part. Let's do a case study.
I'm going to target using an "off-grid but not" algorithm. This is a good piece in my book - middle of nowhere but still trekkable to civilization.
Note: visible power, power/fiber pedestal, utility corridor, nearby commercial enterprise(s), and utility pole shadows visible.
The outrage is not that she fit better. The outrage is that she stated very firmly on national television with no caveat, that there are no conditions not improved by exercise. Many people with viral sequelae have been saying for years that exercise has made them more disabled 1/
And the new draft NICE guidelines for ME/CFS which often has a viral onset specifically say that ME/CFS patients shouldn't do graded exercise. Clare is fully aware of this but still made a sweeping and very firm statement that all conditions are improved by exercise. This 2/
was an active dismissal of the lived experience of hundreds of thousands of patients with viral sequelae. Yes, exercise does help so many conditions. Yes, a very small number of people with an ME/CFS diagnosis are helped by exercise. But the vast majority of people with ME, a 3/
a quintessential post-viral condition, are made worse by exercise. Many have been left wheelchair dependent of bedbound by graded exercise therapy when they could walk before. To dismiss the lived experience of these patients with such a sweeping statement is unethical and 4/
unsafe. Clare has every right to her lived experience. But she can't, and you can't justifiably speak out on favour of listening to lived experience but cherry pick the lived experiences you are going to listen to. Why are the lived experiences of most people with ME dismissed?
Why is it such a source of collective outrage that a person with fatigue following a viral illness gets better?https://t.co/5lcwQBPLU5
— Trisha Greenhalgh \U0001f637 #CovidIsAirborne (@trishgreenhalgh) January 30, 2021
And the new draft NICE guidelines for ME/CFS which often has a viral onset specifically say that ME/CFS patients shouldn't do graded exercise. Clare is fully aware of this but still made a sweeping and very firm statement that all conditions are improved by exercise. This 2/
was an active dismissal of the lived experience of hundreds of thousands of patients with viral sequelae. Yes, exercise does help so many conditions. Yes, a very small number of people with an ME/CFS diagnosis are helped by exercise. But the vast majority of people with ME, a 3/
a quintessential post-viral condition, are made worse by exercise. Many have been left wheelchair dependent of bedbound by graded exercise therapy when they could walk before. To dismiss the lived experience of these patients with such a sweeping statement is unethical and 4/
unsafe. Clare has every right to her lived experience. But she can't, and you can't justifiably speak out on favour of listening to lived experience but cherry pick the lived experiences you are going to listen to. Why are the lived experiences of most people with ME dismissed?
![Peter McCormack [Jan/3\u279e\u20bf \U0001f511\u220e]](https://pbs.twimg.com/profile_images/1524287442307723265/_59ITDbJ_normal.jpg)
