United Kingdom: Oxford Long Covid clinic (includes The Long Covid Self-Help Guide. Practical Ways To Manage Symptoms)

Moved from the Long Covid in the media thread

Book review of The Long Covid Self-Help Guide. Practical Ways To Manage Symptoms by Trish Greenhalgh

"The combination of these and other symptoms, along with the fluctuating course (good days interspersed with bad days, and certain activities possibly acting as triggers), leads to severe functional impairment that affects the person’s ability to work, socialise, and participate in family life. The psychological response — when will it end?; what can/should I do?; is it reactivating again or am I being overcautious? — may lead to a vicious cycle of low mood, reluctance to participate in activities, and worsening fatigue.

The origins of this protracted form of long COVID are disputed; its long-term prognosis is unknown; and there is not yet full agreement on which tests and therapies are appropriate (what symptoms or signs, for example, should prompt the full raft of investigations to exclude thrombotic or cardiovascular complications?).

Rare red flags aside, it is becoming clear that an important component of care is supported self-management in which the patient becomes an expert in their own fluctuating illness (for example, learning to pace themselves as fatigue waxes and wanes) — re-learning the art of breathing efficiently, finding ways of handling sleep disturbance, and developing strategies to cope with the heavy psychological burden of such a disabling and unpredictable condition. This book is written by a multidisciplinary team at the Oxford Post-Covid Clinic, including respiratory physiotherapists, occupational therapists, sport and exercise clinicians, psychologists, rheumatologists, cardiologists, and rehabilitation specialists. It offers a clear lay explanation of the pathophysiology of the condition and how its effects tend to manifest. It also includes chapters on all the previously-mentioned aspects of self- management, easy-reference tips and techniques, and appendices on developing and negotiating a return-to-work plan and key investigations. It is accessible, well-illustrated, non-patronising, and up-to-date. It does not, however, promise or provide a miracle cure."

https://bjgp.org/content/72/719/283

 

There doesn't seem to be any mention of sacrificing a chicken, whilst singing opera, whilst immersed in a glacial lake

 

Good grief the hubris of this woman. What could have possibly convinced her she knows enough about this to actually write a book showing her ignorance? Might as well have titled it "Have you tried yoga? A guide to Long Covid." As if long haulers are not self-managing already. The detachment from reality is just staggering, you can read conversations between the laziest aristocrats in history talking about "the poors" and barely get any more patronizing than this.

Is she even aware that she is completely contradicting her position supporting PACE and the CBT & GET paradigm? That PACE was built explicitly to dismiss the very notion of energy conservation and pacing? Of course not. She knows the words but never bothered understanding them.

And am I correct in remembering that Sharpe is working, or has worked, at this clinic?

Seriously bonus points for having the temerity of writing that this patronizing crap is non-patronizing. And it says the book offers a clear explanation of the pathophysiology? I'm sorry what is this nonsense? That would be complete news to literally everyone. How can such a claim even make it to a book published by an academic press?

 

So did but I can see that how I phrased the first line in my post isn't totally clear.

No idea, the author is listed only as "Oxford The Specialists from the Post-Covid Clinic" on Amazon

Code:

https://www.amazon.co.uk/dp/B09NDXGJJF/ref=cm_sw_em_r_mt_dp_B113A07JZW20FJ0PJNKB

 

Hmm, correct. Not sure what her association with this is then, but she is clearly endorsing it so it doesn't make much difference.

On numerous occasions, she pointed fingers at us as the best example of bad patient advocacy, for literally saying most of the same things here. The only difference is that we are saying this is disastrous failure, the only reason why patients are left to fend for themselves is medicine's failure to do the necessary work, and people like Greenhalgh manufacturing consent to discriminate against us.

And it really does appear like the main connection may be dear old Sharpe:

https://www.bmj.com/content/373/bmj.n1559

Maybe that's one reason why the book doesn't appear to have named authors. Just "the clinic".

 

Thanks for the name drop

Indeed how anyone could claim to know how to manage long covid is beyond me, I wonder what their clinics outcome data is like.

 

I doubt this very much!

 

And those that stay may be tracked at start, some middle point, and six months, which is obviously not very long at all.

The PHOSPH study recently published didn't say great things about outcomes in the clinics involved in that.

Edit
https://www.s4me.info/threads/clini...ecovery-2022-phosp-covid-collaborative.27233/

 

https://www.youtube.com/watch?v=LZKMNauuVCw

 

You can see the names of the contributors to this book (The Long Covid Self-Help Guide) by Using the "Look Inside" option on Amazon, then click on the three lines top left to "Explore contents". You'll find The Contributors section that way.

There are 17 of them mentioned with a little bit of description (so I'm not offering to transcribe them) and then a big chunk of names without a description (additional contributions from...).

 

Link to the preview here

(Wait a couple of seconds until the preview window will pop up.)

Preview includes table of contents (with authors' names) , introduction and a large part of the first chapter = "What is Long Covid?" . I managed also to view the first couple of pages of the chapter "Managing Fatigue".

 

Do we have a good description anywhere which explains all the different names for GET and GET-like exercise regimes and what they consist of?

I get the feeling on some of the LC groups that they accept there is something called 'GET' which people with ME have warned them of, and then on the other hand fail to see it when it is recommended to them, even when it looks quite blatant to me.

 

1. I know that guy
2. Great to hear the physio saying that the more you challenge yourself/your symptoms the more they rebel