UK - NHS England online tool and clinics for long Covid.

I don't think that's much better to be honest.

IF you are at risk of developing ME - and I accept we can't tell who is or is not - then to my mind it takes many, many months to get your head around the concept of pacing/energy envelope/spoons or analogy of choice. it may well take years for the cognitively impaired. Even when you do it is a moving target because the disease itself fluctuates, environmental factors, minor bugs and so on constantly affect what you can and can't achieve. Plus the cognitively impaired may find it difficult to observe when they've gone a bit too far.

Plus of course the same tasks on different days take different levels of resources.

Assuming the possibility of ME, unless you're also assuming some mild & stable form of the condition, one should not at this point be discussing increasing activities at all. If you're allowing for the possibility of ME then you have to allow for the possibility of it becoming severe through mismanagement.

For those not at risk if developing ME it doesn't matter so much when they feel well enough to go do stuff they automatically will. It just might be advisable to pull their punches for a while.

Here's the thing - unless they are suffering from primary depression people will always want to do a bit more when they feel better. It's automatic They really need to be told to do less.

The problem we have here is one of trying to be balanced. You don't want people who could be active lounging around but encouraging those who are at risk of developing ME to rehabilitate will make ME more likely and increase the likelihood of severity. We can't tell which group is which because of the last 35+ years of faux science.

The snag is by trying to "balance" the two groups the group who will be harmed is the group already most likely to be affected by a condition that will destroy their lives.

 

I agree with you @Invisible Woman.

Thinking about my wife, she has improved to some degree over the years, albeit long way from recovered. But that has come about that by taking the opposite strategy to what is suggested there, coming at it from the other direction.

She does not make conscious efforts to increase her activity incrementally; 'increasing' is not the guiding metric. She instead always strives within what she is capable of, wherever that limit may be at the time, and over the years I think that limit has increased a bit for her.

It's not about "progressing with very gradual increases in physical and cognitive activity", it's about living within and towards your limits as best as possible, and letting that limit guide you. It may increase for you, it may reduce for you, indeed it may well fluctuate for you. If you are lucky, then there will be an upward trend over time, but if so then the trend is a happy side effect of the strategy you are pursuing, not actively being driven by it.

If you seek to follow a programme of increasing exercise, that will likely fool you into not properly recognising the limits, and so push through those fragile limits and blow it all apart again.

To the naive it can sound like what I'm saying is the same as what the bold text above is saying, and some may well assert it is. But no, it is not. The bold text is predominantly open loop, with a bit of lip service to closed loop. Predominantly increase, increase, increase activity, with lip service qualifier saying to stay with the envelope limits - but the focus on increasing activity can undermine the necessary focus on limits and to be guided by them.

Closed loop is to recognise the limits and to use them as the guiding yardstick for what activity to do or to not do. To not even think about increasing activity, but just do whatever you can sensibly do in the moment. If those limits extend, then so will your activity as a natural follow on. It's all about the metric you focus on - should not be focusing on increasing activity, but focusing on working within your limit.

As I write this I can see how this runs so very counter to mainstream rehabilitation and will be alien to many who are familiar with and see it as a guiding light. But the whole point is that ME/CFS is far from mainstream.

 

Very well put.

 

To be honest I'm not too worried about that aspect of balancing the information. I'm unconvinced that a pathological fear of activity even exists, at least commonly enough to be included in general guidance – most non-depressed people will just get bored with unnecessary rest. If they push themselves gently and don't suffer relapses, they'll naturally begin to gravitate back towards their normal lives. As you say, it's when people are getting symptoms after activity when they need to be steered towards doing less.

The balance I'm more worried about is warning about the prospect of long-term or lifelong illness. Obviously we don't want to be handing out really dispiriting advice to people who're already struggling after being used to leading active lives – especially if it turns out they've actually got a self limiting post-viral syndrome and will recover – but the prospect is real enough to make us want to warn people not to take risks.

There's also the fact that a full recovery could take much longer than they realise, perhaps a year or more. That's a heck of a financial and career impact, especially for people in their 30s and 40s with mortgages and/or young families. They're already discovering that the benefits 'safety net' is totally inadequate, and people in certain unlucky situations have to dispose of much of their capital before they qualify for any help at all.

Exactly so, especially when the possibility of spontaneous recovery is fading. But before you can manage it well, you have to accept that your life has changed drastically – and possibly irrevocably – and that takes time.

You have to let go of a lot of anger, disappointment, frustration, and 'why me?'; you have to recognise and ditch toxic relationships; you have to readjust your finances and all your ambitions and expectations. It's a grieving process, and no-one can be forced down the road any quicker than their own pace. This is where counselling and psychological therapies could really help some people...but of course that sort of careful, person-focused work can't be given an idiotic set of initials and rolled out via some half-arsed internet programme, so it doesn't appeal.

 

Not sure if it's been posted: https://www.longcovidsos.org/post/longcovidsos-respond-to-the-new-nhs-your-covid-recovery-service.

 

Me too. I don't think it is necessary to try to take a balanced approach and it irks me a bit that this is what seems to be the case from the MEA.

We can't & don't try to offer advice on anything beyond ME and how it can develop and be made worse. So why not just do that?

Why do our national charities still seem to be toeing the establishment line?

 

This is a really good, comprehensive letter. It really needs some good/big press coverage though

 

I'm not entirely happy with:

"Crucially, the guidance fails to emphasise the importance of establishing a safe baseline of activity (which for some people means reducing activity levels) and then progressing with very gradual increases in physical and cognitive activity which take account of a person’s daily energy envelope during the crucial early stages. This is a process known as pacing..."

I'm worried about the reference to 'increases'.

 

I don't think we should be critical of this letter. There is a balancing act to perform. If you tell people to find a baseline and then not seek to increase activity in some ways you will be accused, perhaps not unreasonably, of encouraging exercise avoidance.

 

An excellent explanation. Better than from some supposed experts...

 

Yes, I do agree, because for some their limits may be closing in, and may continue to do so after any supposed baseline has been identified, no matter how much they may wish otherwise. Or maybe their limits simply will not increase, no matter what. In such cases people should not be led to feel they are at fault, or just odd.

 

Dismissive response from NHS England to concerns about graded exercise and Covid recovery

https://meassociation.org.uk/2020/0...rns-about-graded-exercise-and-covid-recovery/

 

Moderator note
This post and several following have been moved from this thread:
NICE Statement about graded exercise therapy in the context of COVID-19
______________

MEAssociation have responded to NHS England's response about NICE's statement and the advice on the Your COVID Recovery website: https://meassociation.org.uk/2020/0...rns-about-graded-exercise-and-covid-recovery/
Powis quotes this from the YCR website [correction, it's NOT from the YCR website - but he said it was "reflected" by it, which it isn't!]:

I'm going to do some digging into this quote and do a follow-up post...

 

History will judge these people, hopefully within their lifetimes.

 

Is that response from Powis coherent? One can only hope that someone else drafted it and that he signed it at the end of a long day.