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

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.
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 asked. So here are my thoughts on how osteopathic medical students should respond to the NBOME.

(thread)


Look, even before the Step 2 CS cancellation, my DMs and email were flooded with messages from osteopathic medical students who are fed up with the NBOME.

There is *real* anger toward this organization. Honestly, more than I even heard about from MD students and the NBME.

The question is, will that sentiment translate into action?

Amorphous anger on social media is easy to ignore. But if that anger gets channeled into organized efforts to facilitate change, then improvements are possible.

This much should be clear: begging the NBOME to reconsider their Level 2-PE exam is a waste of your time.

Best case scenario, you’ll get another “town hall” meeting, a handful of platitudes, and some thoughtful beard stroking before being told that they’re keeping the exam.

Instead of complaining to the NBOME, here are a few things that are more likely to bring about real change.

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