Trisha Greenhalgh on ME/CFS and Long Covid

For a group of people who are at pains to promote the idea that you can not separate mind from body, this seems... lacking. Structure and function are indivisible — an idea that has been in basic medical textbooks for decades. This can be anywhere from the level of gross anatomy (eg the heavy load-bearing, "single-axis" function of the knee joint vs the lighter-weight, freely rotating shoulder joint), through to the ultrastructural and biochemical levels (eg mitochondria, DNA, signalling isoforms).

How is type II diabetes (my blood sugar gets too high) different to POTS (my heart rate gets too high)? Neither has a directly and simply observable structural causative pathology. So they use the term "organic". As far as I can tell "organic" simply means that medicine accepts that the cause is biological and that this is unarguable.

In the DM2 case, glucose, insulin, HbA1c etc are measurably abnormal (plus downstream damaging effects) and you'd be foolish to try and argue a psychogenic cause for this. Not a heck of a lot of difference from my HR measurements, which rise variably and strikingly at times with simply standing and walking around the house.

Passive measurements over 4 years via wearable technologies show normal stable HR responses to rest, light exertion and heavy exercise for the first two years. For the last 2 years they show my resting HR slowly rises and falls during the day, while I am merely sitting at a desk and reading/typing. On a longer timescale it also shows a "sine" wave in my resting HR that has a 6 month periodicity. This looks to me as if it could correlate inversely with sunshine hours in the southern hemisphere, with a lag (peaking in November and minimum in April).

But no - I have developed a pathological fear of standing up.

 

Some snippets of a recent Twitter thread.

(Doug Kell replies with link to 50 of his papers with Resia Pretorius)

 

Given her previous actions I assume that Karen West and Starkadder are now blocked by TG.

 

Not that either have mentioned subsequently. ("Starkadder" is an anaesthetist and Karen West is the Long Covid Allied Health lead for the Southern Health NHS Foundation Trust).

 

@SNT Gatchaman thank you for providing screenshots/details of TG’s tweets because not all of us can read them thesedays.

This thread was very interesting

 

Does one need to have “a certain standing” in the medical community to follow/read certain medical professionals?

 

Starkadder is also clearly a Stella Gibbons fan, so I like them even more.

 

TG: “oo what have I missed?”

A very large ME/CFS elephant in your front room and a steaming pile of BPS dung that it has been shitting on the floor for more than 30 years:

 

Anything claimed without evidence will be much quicker and easier to produce than something which requires people to take drugs (for example). Having to monitor and test people physically in person (because they are taking repurposed drugs or experimental drugs and need blood tests or scans) takes time, ethics are an issue as well, peer review needs to be done. But any paper produced by cogitating on one's own beliefs about sick people could probably be produced in a week.

 

What TG says in the tweets seems reasonable to me. She is surprised by the lack of literature on microclots if they are an important finding. I don't think the lack. of literature is likely to be due to bias - just scepticism amongst haematologists that there will be anything significant to find.

 

no, but anyone that doesn't agree with TG gets blocked by her. And also anyone who likes a post of someone who doesn't agree with her. Or anyone with ME/CFS in their bio. There may be other rules she uses to block people...I was one of the first to be blocked by her, but I think that was for making a joke about Simon Wessely

 

Thought it was a good idea as Twitter is at risk of vanishing and there is important history there. I haven't logged in to Twitter since Nov, so blocks can't have any effect. For people still running accounts, it would be a bit annoying to log in and out to overcome the block, but you can achieve the same effect by using a temporary private browsing window and typing or pasting the Twitter account URL of interest.

 

Don't know! But as recorded previously many pwME including here had been blocked, but also I recall some doctors and other health professionals with LC (or simply collateral damage from their following of other patients). Would have been a bad look if she was still blocking "dissenting" colleagues. Appreciated the elephant in the room reply posted above.

(Included the initial microclot tweets for context, though agree with JE that TG's question itself was very reasonable, noting that haematologists remain appropriately sceptical. Resia Pretorius and Akiko Iwasaki did also comment in that thread, which I've included below.)

 

You don't need any more Kudos Caroline but ----

 

If anybody has any interest in being unblocked by TG on Twitter.

 

Anyone who wants to read what TG says without being unblocked can just log out of Twitter and then read what she has to say. You will probably be prompted to make an account and log in, but if you close the prompt box you should be able to continue. Alternatively follow the prompts until you are actually asked to create an account then close the box without doing so.

I note TG's name has been given as Trish Greenlaugh, which is quite funny, and would make it difficult or impossible for anyone unfamiliar with her to find her Twitter account.

 

TG was co-hosting the Independent SAGE meeting discussing Long Covid on Friday. There is some discussion on the Independent SAGE thread starting here: https://www.s4me.info/threads/united-kingdom-independent-sage.24432/page-4#post-466510

YouTube video of the meeting: https://www.youtube.com/live/d8zwQ0-uwvE?feature=share

 

Much easier way: right-click on a link to the tweet and open it in incognito/private new window.

For tweets that are hidden because of block, you can do the same on any tweet under it and see the original one.

To get a clickable link, you can always use the timestamp on the tweet.

 

That used to work for me, but for some unknown reason it doesn't any more.