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

The bulk of Prof @Trishgreenhalgh’s presentation was on the importance of recognising LongCovid patient’s symptoms, and pathways for patients which recognised their condition as real. So far so good.

She was asked about “Post Exertional Malaise”... 2/n
PEM has been reported by many patients, and is the hallmark symptom of ME/CFS, leading many to query whether LongCovid and ME/CFS are similar or have overlapping mechanisms.

@Trishgreenhalgh acknowledged the new @NiceComms advice for LongCovid was planned to complement... 3/n
the ME/CFS guidelines, acknowledging some similarities.

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
That is correct: The BMJ published Prof Lynne Turner Stokes’ column criticising the change (Prof Turner-Stokes is a key proponent of GET/CBT, and I suspect is known to Prof @TrishGreenhalgh).

https://t.co/0enH8TFPoe

However Prof Greenhalgh then went off-piste.

5/n
Prof Greenhalgh avoided acknowledging significant objective issues with the science underpinning GET/CBT: unblinded trials, subjective outcomes, and candidates not meeting current ME/CFS criteria (few/any trials required Post Exertional Malaise (PEM) to include in the trial).
6/n
Instead, @TrishGreenhalgh blamed the change in @Nicecomms guidelines on “aggressive” (I quote from memory) patient groups. She then identified a well-known friend of hers who did GET, and found it helpful.

Aside from ethical issues of naming patients, this is an n=1 case.

7/n
If I told my GP “my mate got better by doing X” I would be laughed out of the surgery. Why is that being presented as “evidence” to a @CIHR_IMHA audience?

Furthermore, @TrishGreenhalgh failed to mention Prof Jonathan Edwards’ (not on twitter) Expert Testimony.

8/n
Prof Edwards went in to detail on the issues with the GET/CBT trials as part of @NiceComms’ review.

His testimony can be found here:
https://t.co/qLhsBJ4Bcu

9/n
In blaming “aggressive patients” for the change, Prof Greenhalgh took fire not on the science, nor an academic equal, but on patients who, like LongCovid sufferers, probably just want to be acknowledged and recover.

I find this ill-befitting of an academic of her standing.
10/n
She is respected. She has a big platform, to use it to support non-science (n=1 cases) and blame patients is awful, and deserves criticism.

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
There are other medics who have done that, and have become infamous for their poor pronouncements. I hope that @TrishGreenHalgh will not go the same way.

We must play the ball, not the player.

12/n
As for ME/CFS patients? Well, who needs research when they get better with graded exercise, right?

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
As to “aggressive patients”, I do not know their story, but perhaps LongCovid and Endometriosis sufferers will sympathise with the pain of being dismissed?
It really hurts.

And how ‘aggressive’ were these patients? Is this tweet aggressive? Will I be blocked and blamed?

14/n
Why do I care?
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
I am not alone. A friend was diagnosed with #MECFS for a decade. It turned out she had Cushings.

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
Both would have erroneously supported GET & CBT, in spite of not having PEM or ME/CFS.

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
As fellow humans, we should support the sick.

The condition needs research, and that starts with belief, and develops with high-quality, objective science.

END/
@bendymarsh, @benh_mecfs grateful for your thoughts.
Addendum: Well, I have been blocked, and comments have been made.

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.
In my comment I have tried hard to avoid Ad Hominem or malice. Challenge is not malice.

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.
People have a right to reply. She didn't reply to me, but this is her recollection of the discussion. I hope including it makes this thread more balanced.

More from Education

New from me:

I’m launching my Forecasting For SEO course next month.

It’s everything I’ve learned, tried and tested about SEO forecasting.

The course: https://t.co/bovuIns9OZ

Following along 👇

Why forecasting?

Last year I launched
https://t.co/I6osuvrGAK to provide reliable forecasts to SEO teams.

It went crazy.

I also noticed an appetite for learning more about forecasting and reached out on Twitter to gauge interest:

The interest encouraged me to make a start...

I’ve also been inspired by what others are doing: @tom_hirst, @dvassallo and @azarchick 👏👏

And their guts to be build so openly in public.

So here goes it...

In the last 2 years I’ve only written 3 blog posts on my site.

- Probabilistic thinking in SEO
- Rethinking technical SEO audits
- How to deliver better SEO strategies.

I only write when I feel like I’ve got something to say.

With forecasting, I’ve got something to say. 💭

There are mixed feelings about forecasting in the SEO industry.

Uncertainty is everywhere. Algorithm updates impacting rankings, economic challenges impacting demand.

It’s difficult. 😩
When the university starts sending out teaching evaluation reminders, I tell all my classes about bias in teaching evals, with links to the evidence. Here's a version of the email I send, in case anyone else wants to poach from it.

1/16


When I say "anyone": needless to say, the people who are benefitting from the bias (like me) are the ones who should helping to correct it. Men in math, this is your job! Of course, it should also be dealt with at the institutional level, not just ad hoc.
OK, on to my email:
2/16

"You may have received automated reminders about course evals this fall. I encourage you to fill the evals out. I'd be particularly grateful for written feedback about what worked for you in the class, what was difficult, & how you ultimately spent your time for this class.

3/16

However, I don't feel comfortable just sending you an email saying: "please take the time to evaluate me". I do think student evaluations of teachers can be valuable: I have made changes to my teaching style as a direct result of comments from student teaching evaluations.
4/16

But teaching evaluations have a weakness: they are not an unbiased estimator of teaching quality. There is strong evidence that teaching evals tend to favour men over women, and that teaching evals tend to favour white instructors over non-white instructors.
5/16

You May Also Like

Still wondering about this 🤔


save as q
प्राचीन काल में गाधि नामक एक राजा थे।उनकी सत्यवती नाम की एक पुत्री थी।राजा गाधि ने अपनी पुत्री का विवाह महर्षि भृगु के पुत्र से करवा दिया।महर्षि भृगु इस विवाह से बहुत प्रसन्न हुए और उन्होने अपनी पुत्रवधु को आशीर्वाद देकर उसे कोई भी वर मांगने को कहा।


सत्यवती ने महर्षि भृगु से अपने तथा अपनी माता के लिए पुत्र का वरदान मांगा।ये जानकर महर्षि भृगु ने यज्ञ किया और तत्पश्चात सत्यवती और उसकी माता को अलग-अलग प्रकार के दो चरू (यज्ञ के लिए पकाया हुआ अन्न) दिए और कहा कि ऋतु स्नान के बाद तुम्हारी माता पुत्र की इच्छा लेकर पीपल का आलिंगन...

...करें और तुम भी पुत्र की इच्छा लेकर गूलर वृक्ष का आलिंगन करना। आलिंगन करने के बाद चरू का सेवन करना, इससे तुम दोनो को पुत्र प्राप्ति होगी।परंतु मां बेटी के चरू आपस में बदल जाते हैं और ये महर्षि भृगु अपनी दिव्य दृष्टि से देख लेते हैं।

भृगु ऋषि सत्यवती से कहते हैं,"पुत्री तुम्हारा और तुम्हारी माता ने एक दुसरे के चरू खा लिए हैं।इस कारण तुम्हारा पुत्र ब्राह्मण होते हुए भी क्षत्रिय सा आचरण करेगा और तुम्हारी माता का पुत्र क्षत्रिय होकर भी ब्राह्मण सा आचरण करेगा।"
इस पर सत्यवती ने भृगु ऋषि से बड़ी विनती की।


सत्यवती ने कहा,"मुझे आशीर्वाद दें कि मेरा पुत्र ब्राह्मण सा ही आचरण करे।"तब महर्षि ने उसे ये आशीर्वाद दे दिया कि उसका पुत्र ब्राह्मण सा ही आचरण करेगा किन्तु उसका पौत्र क्षत्रियों सा व्यवहार करेगा। सत्यवती का एक पुत्र हुआ जिसका नाम जम्दाग्नि था जो सप्त ऋषियों में से एक हैं।
I'm going to do two history threads on Ethiopia, one on its ancient history, one on its modern story (1800 to today). 🇪🇹

I'll begin with the ancient history ... and it goes way back. Because modern humans - and before that, the ancestors of humans - almost certainly originated in Ethiopia. 🇪🇹 (sub-thread):


The first likely historical reference to Ethiopia is ancient Egyptian records of trade expeditions to the "Land of Punt" in search of gold, ebony, ivory, incense, and wild animals, starting in c 2500 BC 🇪🇹


Ethiopians themselves believe that the Queen of Sheba, who visited Israel's King Solomon in the Bible (c 950 BC), came from Ethiopia (not Yemen, as others believe). Here she is meeting Solomon in a stain-glassed window in Addis Ababa's Holy Trinity Church. 🇪🇹


References to the Queen of Sheba are everywhere in Ethiopia. The national airline's frequent flier miles are even called "ShebaMiles". 🇪🇹