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

Andy

Retired committee member
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
 
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How can they have a clear explanation of the pathophysiology if the condition for the lay person when there is none even for those of us who aren't "lay persons"?

It also seems weird to me to not include a dietitian in this, when physios, OTs and psychologists are included. You know, given the number of people (now I'm just guessing) who have been told to "eat more kale" and the like. I'm not trusting that physios, psychologists and others have a good grasp of nutrition when ill, sorry.
 
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
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?
 
I thought she was just reviewing the book. Did she write it too?
I am very concerned from the review that there is only the vaguest mention of what might be PEM, and the old nonsense about fear of activity leading to avoidance and increasing fatigue.
 
I thought she was just reviewing the book.
So did but I can see that how I phrased the first line in my post isn't totally clear.

Did she write it too?
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
 
I thought she was just reviewing the book. Did she write it too?
I am very concerned from the review that there is only the vaguest mention of what might be PEM, and the old nonsense about fear of activity leading to avoidance and increasing fatigue.
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:
The pandemic has seen Sharpe back in Oxford, helping to set up a multidisciplinary long covid clinic involving medical specialists, physiotherapists, occupational health practitioners, and psychologists. Clinics of this sort, with a similar range of clinical expertise, have been set up around the UK.
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".
 
I have looked at the book on Amazon. Greenhalgh is a professor of general practice at Oxford Uni, and the book is written by clinicians at the Oxford Long Covid clinic, but she's not mentioned on the author list, so it looks like her role is simply as reviewer.

This is the bit from the Greenhalgh review that concerns me:
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.

From one of the reviews on Amazon:
I found the chapter on fatigue really helpful, as it confirmed my hunch that I’d become under-active and needed to – very gently – step up my daily activity. I am also finding the chapter on Up-pacing invaluable. It’s the first time I’ve encountered this term and provides me with a way to structure an exercise programme to recondition my unfit, bed-softened body while minimising the risk of another major relapse where I’m too shattered to get out of bed.
So it's GET relabelled as Up-pacing. All very well for those who are recovering anyway, but concerning as general advice. We'd have to read the book to find out whether it expains PEM adequately.

Edit: This is from another review:
There are many diagrams and useful templates for pacing etc.
 
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?
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.
 
Oxford University Hospitals (OUH) NHS Foundation Trust and Oxford Health NHS Foundation Trust are among more than 60 sites that are running an assessment service which will take referrals from GPs for people experiencing symptoms such as brain fog, anxiety, depression, breathlessness, fatigue and other debilitating symptoms.
 
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...).
 
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.

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.
 
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