Supporting patients with long COVID return to work, 2021, Madan, Briggs and Chew-Graham

Andy

Andy

Retired committee member
Post-COVID-19 syndrome, often called ‘long COVID’ refers to signs and/or symptoms that develop following COVID-19 infection, which continue for more than 12 weeks and are not explained by an alternative diagnosis.1 Long COVID presents with clusters of symptoms, often overlapping, can affect any system in the body, and fluctuate in time and severity. Symptoms of long COVID that commonly impact on function and may impede return to work (including travel to and from work) include fatigue, shortness of breath, chest pain, and neurocognitive impairment.1

This article presents the guiding principles of supporting people with long COVID to return to work based on a review of the current literature and guidance from the Faculty of Occupational Medicine of the Royal College of Physicians.2 Return to work can be an effective part of rehabilitation from illness and is generally good for health, providing a sense of purpose, boosting self-esteem, and enabling financial independence.

Open access, https://bjgp.org/content/71/712/508
 
Andy said:
Return to work can be an effective part of rehabilitation from illness and is generally good for health, providing a sense of purpose, boosting self-esteem, and enabling financial independence.
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Oh, if only PwME had good enough health to work, even part-time. "We" would love to have the money and other benefits it provides.

How can these people be so naive and keep spouting this garbage:
  • sleep hygiene
  • IAPT ...
The number of doctors and other health professionals with Long Covid MUST surely impact their views at some stage.

Or will they just "Do a Trudy" and explain not being well enough to work as an extreme behavioral reaction.
 
While agreeing being able to work is very important for self esteem and financial independence, this article makes no mention of the symptoms of PEM, cognitive issues/brain fog, etc, only suggests sleep hygiene as a means of managing fatigue, has no discussion of severity, no discussion of the relationship between ME/CFS and Long Covid and completely ignores the fact that we have little data on long term prognoses.

[cross posited with above comment]

[added - Perhaps it could be summarised as hope for the best and push for more activity and all will be wonderful. Unless of course it isn’t then it’s obviously the patient’s fault.

Why do so many people feel able to spout the rehabilitation is wonderful party line without any actual evidence?

Great, provide adjustments to help people back to work, but also support those that will never be able to do so, and ensure your intervention is not increasing the numbers who will never return long term to work.]
 
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I was back starting very gradual phased return within 6 weeks of finally getting a diagnosis. I tried for months and months to increase hours worked. That was based on the AFME ‘pacing up’ booklet written by a member of BACME. Went to the CFS clinic in 2016 and did their ‘programme’ which ‘definitely wasn’t GET’ but involved one to one sessions where you were encouraged to set goals and subtly encouraged into more activity. I never was able to work more than 15 hours a week and couldn’t maintain that satisfactorily to deliver the requirements of my job.

I got a lot of support from one manager and a couple of colleagues. But for the rest feeling you’re perceived as not pulling your weight is counterproductive to pacing yourself. Not helpful to any possible chance of your level of symptoms reducing.

What actual evidence do they have that return to work is therapeutic in people with Long Covid. It is all based on assertions.
 
Trish said:
Yes, one in which everyone is healthy and anyone not able to do paid work is lazy. And where all kinds of work, however ghastly and ill paid and bullying etc. is 'good for health, providing a sense of purpose, boosting self-esteem'. Where has compassion gone?
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After the publication of the RCs most recent letter that attempts to undermine the new guideline, I am beginning to think it may have just been the presence of Dame Carol Black that led to their civil, non-argumentative behaviour at the roundtable event.
 
I think the RC representatives may well have realised that they were going to achieve nothing at the roundtable so just made a few noises to fulfil their apparent role as objectors but were careful not to say anything too silly.

The plan was probably already in place to say the silly things in a statement after publication. That way there would not be 15 people in the room who would be seriously unimpressed.
 
Jonathan Edwards said:
I think the RC representatives may well have realised that they were going to achieve nothing at the roundtable so just made a few noises to fulfil their apparent role as objectors but were careful not to say anything too silly.

The plan was probably already in place to say the silly things in a statement after publication. That way there would not be 15 people in the room who would be seriously unimpressed.
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That statement was (I thought about what I was going to write but decided to sum it up) nasty. The arrogance they show is breathtaking.

I have tried to understand how they justify their attitude to patients. Not listening is too generous to them. Presented with a guideline from professional body who have decided a treatment harms patients they ignore that evidence and assume they know better so they have no need to consider it.

I can understand (though it is hard to forgive) the way the the ones who actually did the research have reacted but the doctors putting their weight behind them instead of being eager to learn about the disease and claims of serious harms from a treatment is horrible. Nurses are taught to protect the welfare of their patients should we expect less from doctors?

My mother's schooling ended aged 10 because of the war and she made a poor living as a cleaner but the places she was responsible for were spotless and she was well liked where she worked because she did everything to her best ability. How disappointing that these so called professionals are less diligent and give a second rate service.
 
Mithriel said:
I have tried to understand how they justify their attitude to patients. Not listening is too generous to them. Presented with a guideline from professional body who have decided a treatment harms patients they ignore that evidence and assume they know better so they have no need to consider it.
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Having seen such attitudes from doctors for years (i.e. there is nothing wrong with you and it's all in your head) I have assumed that it was because the DHSC (previously known as the DWP) wanted to spend less (or preferably nothing) on welfare benefits for people with ME. I have further assumed that doctors at the top of the Royal Colleges realise that getting a knighthood or becoming a dame is dependent on them acting in a way that the government will like, even though it makes the lives of patients much, much worse. In other words, I assume it is all based on self-interest.
 
Can I relate my experience of visiting a Rehabilitation Consultant on Friday morning.

I was referred by my GP, who said they had an interest in ME CFS.

Asked to suggest 'easy wins' to improve my condition I suggested - sleep and diet.

In the presence of my wife and two students, she suggested keeping a food diary and eating little and often. Helping my cellular 'little clocks'.

The other suggestion, after my request to be referred to a sleep clinic was denied, was 'good sleep hygiene', diary keeping etc.

In exasperation I told her I had video of me sleeping. I explained that, this may seem odd but if you've been told so many times that your complaint is trivial....

She's asked me to send her video clips!

That was that. It didn't pan out as I expected. I've been playing whack a mole with food diaries for a decade.

I feel utterly despondent. Disgusted with myself for going back and speaking to anyone about ME. Demeaned.

It's my firm belief that she knows little of ME much less the challenges. My wife who is an OT was staggered that a consultant was so shallow and banal.

This post has been copied and replies on the topic of diet has been moved to the thread "Food, supplements and health - a general discussion thread".
 
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Unfortunately, I was pushed out of my job, after losing just one term to ME. It took a year to secure a pension but with the loss of warranted enhancements. I have costed what this income reduction, and as I also held a further role beyond the classroom I probably lost £500,000 total income. Who would deny themselves that sort of money to watch 'This Morning' every day? Everything had to change at that point in order to survive on less. The Wessely Acadamy of practioners deliver their precepts and when scrutinised against life as it is truly lived, not one journalist found fault with the mindset, and too few even today. I noted The Independent's take on the publication of the NICE guidelines. It couldn't bring itself to state 'research has found' preferring to write "campaigners" , Every day is hell, even 35 years later. Why do these naysayers get so much traction?
 
I think the logic goes:

sick person is unhappy person
persuade sick person to go back to work
work makes people happy
sick person becomes happy person
being happy makes people healthy
happy sick person becomes happy healthy person.
 
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