This blog is in response to a Twitter exchange I experienced yesterday but also relates to the NICE guidelines review first draft.
I had seen a tweet from a Long Covid patient; they had received a letter from their Respiratory Consultant and was ‘confused’ about the content. The Consultant was discharging her from Respiratory due to not finding anything wrong with their lungs and encouraging the Long Covid patient to ‘increase activity’.
I responded by saying that the Coverscan webinar on Long Covid breathlessness had said it isn’t usually the lungs that cause breathlessness but other organs including the heart. It’s fascinating stuff and well worth a watch! (there is now talk about using this technology for M.E too) I have a vested interest because I am now a Long Covid patient and am experiencing ongoing breathlessness and chest pain. The cause is, as yet, unknown and investigations continue. I also said to ignore the advice to ‘increase activity’ as NICE have issued guidance against it.
A GP (recovered Long Covid patient) replied to my tweet with –
NICE haven’t said don’t increase activity. They’ve said don’t do GET which is increasing every time you do something inspite of how you feel and to increase it exponentially. It’s important to keep moving but not to push through regardless.
This response is the exact reason why I believe the review of the NICE guidance (first draft) does not go far enough. There is too much wiggle room and I believe Long Covid patients will have the exact same problem that the M.E community has had for years.
I wish I had chosen my words slightly more carefully but my point remains the same. ‘Increasing activity’ hints at deconditioning; something which neither M.E nor Long Covid is. I was experiencing a low mood day yesterday and felt too fragile to have a debate about what GET is and is not. I hope I manage to explain my view coherently in this blog!
Since the very start of the pandemic I have been advising Covid19 patients to rest (even before Long Covid became a thing), I have been actively telling patients to rest to limit the risk of chronic illness. I didn’t specifically mention GET (Graded Exercise Therapy) as the ripple effects from the PACE Trial go much further than the Physio-led ‘therapy’. GET is the foundation of the suggestion that exercise helps 
‘recovery’, this notion has been adapted and manipulated by various medical professions to a point where it has become ALMOST unrecognisable. I would say however that any suggestion to ‘increase activity’ can be traced back to the PACE trial and GET. I have never been told to participate in Graded Exercise Therapy but I have been told by numerous GPs to ‘take my dog for a walk more often’ or ‘start going swimming again and increase your swimming time’.
My video message to newly diagnosed M.E and Long Covid patients.
My own Respiratory Consultant, during our video consultation and in the follow-up summary, has warned me of deconditioning and has told me to increase my activity to 30 minutes per day 5 times a week. Remember I have M.E. My Consultant knows I have M.E. Does ‘increase your activity to 30 minutes per day’ sound like GET? (as per what GET was originally supposed to be?) No, it does not. I would say this is my Consultant’s interpretation of GET. According to the Covid19 ‘guidance from NICE‘, GET should only be undertaken as part of ‘specialist care’. How is telling me to increase my activity to 30 minutes per day 5 times a week ‘specialist care’? I have not been referred to Physiotherapy and have not been given any guidance as to how to do this safely. I have spoken to other Long Covid patients in my local area, all have received the same advice – they don’t have M.E and so didn’t know about Pacing or the energy envelope.
I have submitted a complaint to my Consultant about the recommendation to increase my activity. I sent them a copy of this Workwell Foundation ‘letter to Health Care Providers‘ and explained that her recommendation was not only inappropriate for me as an M.E patient but also as a Long Covid patient- Double whammy! I forwarded this correspondence to my local MPs, GP, and local ‘Long Covid Response Team’ that I have been liaising with for a few months to create an ongoing policy of care for Long Covid patients. I have not received a response from my Consultant, I have not had my CT scan results either; I am anticipating that they will be ‘clear’ as that has been the experience of many other Long Covid patients already. That means I will be discharged from Respiratory and the quest for new investigations starts all over again.
I am genuinely concerned that this advice to ‘increase activity’ is being given to newly-sick Long Covid patients who do not know that this level of activity could cause a severe setback in recovery. They will not know about the poor knowledgebase on M.E within the medical profession, they won’t know that only 39.4% of GPs believe M.E is psychological or psychosomatic and 71.4% had no prior teaching on M.E. Why is this important in terms of Long Covid? Because M.E is Long Covid’s closest cousin, the reason medics are floundering with Long Covid is they don’t know the basics of post-viral illnesses. They don’t understand how M.E is counter-intuitive and exercise/activity has the potential to be harmful.
I have lost count of the number of M.E AND Long Covid patients who have posted on social media that they were told to ‘increase their activity’ by their GP so went for a walk on a ‘good day’ and ended up crashed in bed for 3 days afterward. If GPs say this but actually mean ‘movement’ as per the tweet that started all this, they need to change their language. Say ‘movement’ and not ‘activity’. GPs also need to give patients guidance on Pacing. So far, the M.E community has stepped up to educate on how to micromanage energy levels because we are experts at it, but Long Covid patients should be getting this information from their medical professionals.
Chantelle Martin (Stripy Lightbulb CIC Director and Senior Occupational Therapist) and I have tried to come up with an alternative word to ‘pottering’, a word that is much more ‘medical’ but we have been unable to. ‘Pottering’ around your house should be your activity limit during the early phase of chronic illness where energy limitations are an issue. Chantelle contributed to this ME Foggy Dog blog – Complaint About Exercise and Covid19 Article
In patients who previously were young, fit and healthy without long-term conditions, deconditioning is not a priority. The priority should be rest and pacing in order to be able to do basic living skills before prioritising leisure and exercise. Fitness can be improved only once this is manageable’
I should also say that prior to Covid19, it was known amongst the M.E patient community that Physios themselves did not necessarily understand what GET involved. To be clear, GET is harmful to M.E patients but when Physios ask patients to increase their ‘exercise’ on treadmills, cross-trainers, and rowing machines, the GET idea of small incremental increases of activity levels go out of the window. If ‘small incremental increases’ have now been warned against by NICE surely that would include activity levels that are even more extreme than increases of activity in stages of 2-5 minutes?
I am hoping that the NICE guidance wording is tweaked to warn about the potential harm of ANY increase in AEROBIC activity. If you are an M.E patient, don’t forget to have your say on the NICE guidance first draft – all M.E charities are giving you the option to send them your comments.
Love
Sally (and Foggy OBVIOUSLY)
xxxx