I wrote a letter of complaint to the University of Wolverhampton regarding this article in which Prof. Wolman states-
Post-viral fatigue is a well recognised condition following a viral infection. There has also been much debate in the medical literature about the existence of Myalgic Encephalomyelitis (ME) and whether this occurs following a viral illness.’
and ‘Exercise has a key role to play for those patients whose ongoing symptoms are due to de-conditioning and post- viral fatigue.’
I have been accused, by a former M.E patient, of misinterpreting what Prof. Wolman said re. the existence of Myalgic Encephalomyelitis. I would ask why he wrote that the existence of M.E is being debated if he believes that it does exist? Prof.Wolman wasn’t simply querying whether M.E can be triggered by viruses. In my complaint, I pointed out that M.E has been categorised as neurological by the World Health Organisation since 1969. This is where false beliefs, including that M.E is psychological, cause harm, the impact is now also being felt by Long Covid patients. I wrote the complaint with my Stripy Lightbulb CIC hat on but the key points from my complaint were-
- Prof. Wolman has demonstrated a clear lack of understanding of how increasing activity levels has a significant negative impact on many patients after an acute viral infection. A large number of Long Covid patients are exhibiting symptoms of Post-Exertion Malaise (PEM) many months after contracting Covid-19. PEM is the key defining characteristic of Myalgic Encephalomyelitis (M.E) Chronic Fatigue Syndrome (C.F.S). It is too soon to know whether these Covid-19 patients will go on to develop M.E/C.F.S but this should be considered as a possibility.
- Is Prof. Wolman aware that the NICE guidelines on Graded Exercise Therapy are currently under review due to the harm it causes M.E/C.F.S patients? Exercise/Increased activity and M.E/C.F.S (and more recently Long Covid) do not mix.
By encouraging Long Covid patients to increase their activity, he is potentially increasing their risk of permanent chronic illness. NICE has issued guidance on ‘post-Covid’ and has warned against increased exercise. So why has Prof. Wolman gone against this advice?
I am genuinely concerned at the sheer amount of medically trained professionals who are encouraging Long Covid patients to exercise to get better. Whether they go on to develop M.E/C.F.S or not, NICE are concerned enough to issue a warning against exercise for Long Covid patients. Frustratingly, NICE haven’t changed the guidance for M.E/C.F.S despite plenty of anecdotal evidence of deterioration after exertion.
This is Prof. Wolman and Matthew Wyon’s response to my complaint.
Thank you for your responses and the concerns raised. We argue, and a great deal of
evidence will support our argument 1-3 , that physical activity and the capacity to do basic
functional movements are fundamental for physical and mental health. If people are inactive,
and inactive for some period, even the smallest amount of activity is likely to be tiring and be
perceived as difficult 4,5 . We suggest that if managed carefully, around individual abilities, then
people can progress in their physicality and this will benefit physical and mental health. We
argue that the reverse of being inactive will lead to a deterioration and agree that it is a fine
line to identify how much activity people should do. We recognise that Graded Exercise
Therapy is under review by NICE and isn’t for every person with ME/CFS unless the starting
point of exercise/activity is tailored individually and monitored closely. Some evidence shows
that Graded Exercise Therapy seems to only benefit those with mild to moderate symptoms
as part of a wider individualised holistic intervention 6,7 . For patients with more severe
ME/CFS a functional restoration approach will be needed that involves planning and
prioritising physical and cognitive activities and very importantly rest so that their activity can
be paced over a period of time. It should be noted that this will still involve activity and the
goal is that over time, people adapt. If done individually, this should prevent a “boom or bust”
outcome, where too much activity is undertaken which results in bedridden fatigue over the
following days. We understand that “recovery” may not ever be achieved for those with
ME/CFS and the aim of any intervention is to improve the quality of life of the individual
within their own functional capabilities.
The focus of the blog was on recovery strategies for those who had Covid-19 and to provide
a perspective based on the current evidence available. We appreciate that the evidence of
how Covid-19 will affect people long term is constantly being updated and amended as more
data become available and the NHS has provided a website to help survivors with this
progression (https://www.yourcovidrecovery.nhs.uk/). Some Covid patients do display
symptoms similar to Post-Exertion Malaise, but the evidence is still arbitrary. For some Covid
patients who were admitted to Intensive Care Units in hospital, a reasonable high proportion
of them (40%) will have suffered from Intensive Care Unit Acquired Weakness (ICUAW) 8 .
The symptoms are muscle weakness, bioenergetic failure, muscle inflammation, reduced
deep tendon reflexes, and sensory loss 9 . The long-term bed rest will also affect specific
postural muscles (calf, core, and upper leg) and balance. Depending on how long the patient
was in ICU, recovery can be a long process lasting months or years.
Guidelines from the National Post-Intensive Care Rehabilitation Collaborative highlight the
need for therapeutic interventions with a multidisciplinary approach and understanding
where the participant is starting from is imperative 10 . Setting realistic goals, based on their
current abilities and not their previous capabilities is also vital, an initial goal might be
managing to walk upstairs unaided. Managing those expectations with the realisation that
previous physical and cognitive competences might never be achieved is a vital component
of an intervention. How they respond to an intervention (both physically and mentally) needs
to be monitored closely to make sure there are no negative consequences. An important
aspect of the intervention is not just the activity completed but the recovery afterwards,
planned sleep and during-the day-down-time also need to form part of an intervention.
Alongside this there is a need to focus on healthy nutrition and fluid intake, focusing on the
reduction of simple sugars, alcohol, and caffeine intake. How this provision is then taken into
the community for long term care also needs to be developed and initial steps have been
suggested 11 .
We recognised that everyone is an individual and no one therapeutic intervention is suited to
all but should be focused on maximising an individual’s quality of life within the confides of
References supplied at the bottom of this blog.
I don’t have the energy to play email ping pong, however, I am not happy with Prof. Wolman’s reply. In the article, he wrote about the whole of post-covid not just severely affected, ICU admitted, patients. Both communities, Long Covid and M.E, know that GPs and medics across the UK and wider world recommend exercise as a cure all for everything. Long Covid’s are taking to social media and saying that their GP has just told them to go for a walk. They are being treated in the exact same way as M.E patients despite the NICE guidance. We desperately need medics to change the narrative. Patients do not decondition after 6 months of pottering around their house. As Stripy Lightbulb CIC Director and Occupational Therapist/Social Prescriber Chantelle Martin states –
In patients who were previously 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.
By pushing increased activity, medics are risking the future health of their patients. The M.E community knows this, that’s why we have desperately been trying to connect with as many Long Covid’s as we can before harm can be done. Hopefully, now Long Covid’s know enough about the harm exercise can inflict on patients ‘recovering’ from a virus and can advocate for themselves as we have learned to do over time.
Rest up, potter, take care,
and Foggy (OBVIOUSLY)
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