exercise + ME + long covid & the BBC (part 2)

Exercise * ME * Long Covid & the (bloody) BBC …

Read exercise + ME + long covid & the BBC (part 1) …

… I know I already had my …
… other recent post about this subject …

… BUT …

I don’t generally post twice in one day, especially about the same subject matter, but I feel rather moany about this subject and so as well as placing this in its rightful category ‘illness & health’ I also felt I felt it had to be put in the ‘reflections & ramblings’ category too.

the BBC & ME …

When it comes to the BBC and ME I genuinely feel they don’t give ME fair and equal press. They downgrade and down play it, misquote and misinform, and even allow the use of ME as the butt of many a joke, despite numerous complaints.

a bit of history …

At the start of covid my husband responded to a BBC article and didn’t even receive an acknowledgement from them. Despicable and disrespectful too.

the bloody BBC …

And so they are at it again. Feeding the UK public untruths regarding ME, not getting their facts right, and potentially giving out dangerous advice to unsuspecting new patients of both ME and of long covid.

Meaning that all advocates for truth, and for the truth about ME, have to rectify the wrongs of the bloody BBC.

correcting the wrongs …

I needed to share with you The ME Association response to BBC newsnight last night and the implications that exercise is a cure for ME and by default a cure for long covid too. This information, potentially taken as advice by some, is dangerous and tantamount to medical neglect and worthy of sacking.

Please, please, anyone with any chance of having ME/CFS or long covid, take heed and read …

… i t   i s …
. . .   i m p o r t a n t   . . .

everything below is taken in its entirety
from ME association website

 fragmented.ME xXx

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Blog article to follow is Copyright © ME Association (April 2021).
Updated April 2021. From www.meassociation.org.uk …

ME Association Statement on Exercise in ME/CFS and Long Covid

April 21, 2021

Russell Fleming, Content Manager, ME Association 

The ME Association decided to issue this position statement on exercise and activity management in ME/CFS (and Long Covid) in light of recent discussions which have appeared on, for example, BBC Newsnight, and in the Guardian newspaper and that are continuing online.

• Please also read: ME Association Statement re: BBC Newsnight report on Long Covid & ME/CFS | 20 April 2021 (quoted below)

ME Association Complaint Re: Newsnight 08 April 2021 Long Covid & ME/CFS

Dr Charles Shepherd, 14 April 2021 

Dear Sir, 

There was a serious lack of balance and information in this Newsnight report regarding the efficacy and safety of using intensifying exercise programmes in the management of ME/CFS and Long Covid.  

1. NICE has reviewed clinical trial and patient evidence on the safety and efficacy of graded exercise therapy (GET) in ME/CFS and concluded (in the current November 2020 working draft of the new ME/CFS guideline) that GET should no longer be recommended as a treatment.  
   Extensive patient evidence has repeatedly confirmed that over half of people with ME/CFS who have been treated with GET have been made worse as a result. 

2. The NICE guideline on Long Covid is not recommending GET for Long Covid.   

3. Given the fact that a significant number of people with Long Covid have undetected respiratory or cardiac/myocardial damage, and that suddenly returning to an intensifying exercise programme could precipitate cardiac arrhythmias in those with cardiac damage, a warning about this potential and serious adverse event should have been included. 

4. The statement regarding a research survey carried out by Professor Singh: 

“Medics running Long Covid clinics…… A survey of over 1000 clinicians showed over 87% supporting the use of intensifying exercise programmes” 

 …was misleading and requires a correction. 

This research was carried out in early April 2020 – well before Long Covid was recognised as a serious post COVID condition and one where undetected cardiac damage could be present.  

The respondents were mainly physiotherapists – only 6% were physicians.   

There is no reference to the safety and efficacy of using an intensifying exercise programme for people with Long Covid in this survey.  

Reference:  https://bmjopen.bmj.com/content/10/12/e040213 

I would be grateful if you could investigate these concerns and look forward to hearing from you in due course. 

Yours sincerely, 

Dr Charles Shepherd 

Hon. Medical Adviser, ME Association 

Graded Exercise Therapy

The ME Association is not and never has been against exercise per se. What we have consistently been saying since publication of the current NICE guideline (2007) and the PACE Trial (2011), is that use of regimented and inflexible graded exercise therapy as a management approach for people with ME/CFS is wrong, ineffective, and can cause harm.

We have repeatedly called for GET to be withdrawn as a recommendation by NICE, have supported research that has found clinical trial evidence to be defective, and we have supported the publication of patient survey evidence which has consistently shown how ineffective and harmful this method of treatment can be.

The campaign we were a part of to overturn the NICE recommendation, culminated in the largest ever ME Association petition (2017). NICE finally decided to completely review the ME/CFS guideline, and after a full assessment of the evidence, it withdrew its endorsement of GET in November 2020. NICE has also cautioned against the use of GET for Long Covid.

See also

• PACE Trial reanalysis and Illness Management Reports
• MEA Report on Illness Management – Patient Outcomes Survey (2015)
• Forward-ME & Oxford Brookes University: Report on CBT/GET Patient Survey (2019)

Activity Management

For some people, depending on their current state of health and functional ability, exercise can be carefully introduced as part of activity management or pacing, so long as the individual can accommodate an increase in physical activity and it does not lead to an exacerbation or relapse of ME/CFS symptoms.

The same is true of Long Covid – although people with this condition and the health professionals who treat them also need to be aware of any potential organ damage relating to the initiating Covid-19 infection that would require additional medical care.

With both conditions, health professionals need to be aware that people who have been unable to lead active lifestyles because of illness and who are still disabled, should not be coerced into suddenly adopting potentially harmful exercise regimens that fail to take into account likely risk factors.

Exercise comes in many forms, and while it is not a realistic goal for many with ME/CFS – and we are against any form of strenuous aerobic exercise – gentle exercise in the form of short walks outside, gentle swimming, short cycle rides or yoga can be beneficial when people are showing definite signs of improvement, or as an aid to increasing fitness.

Pacing or activity management takes account of an individual’s current abilities and when practised correctly, allows them to function inside of their ‘energy envelope’ while the body heals enabling symptoms to be managed.

The level of function can vary considerably between individuals and at different times. ME/CFS is considered a fluctuating illness  and severity is defined broadly as Mild, Moderate, Severe, and Very Severe. Exercise might only be possible for people who are mildly affected, but even then, they need to take care and avoid potential relapses.

More information

• MEA Leaflet: Prognosis, Permanency & Quality of Life
• MEA Leaflet: Disability Classification & Illness Severity Definitions

The ME Association has not encountered anyone with ME/CFS who has not tried to push against their limits from time to time, when they think they can, or when circumstances allow or dictate. However, exercise is not a panacea or proven means of recovery. Indeed, exercise is contra-indicated for many who are still struggling to achieve basic daily functions.

Cautious trial and error can be a way of learning we can do more – or that we should be sticking where we are, or even doing less. It is natural to try and push and to fight to get back to work or education as part of our efforts to return to ‘normal’ life especially while we are wrestling with acceptance.

Nobody wants to remain housebound or bedbound or limited by ill-health and having to depend on the support of others. This isn’t about a lack of positive mental attitude or avoidance based on fear. It is about realistic expectations and trying to prevent further harm.

People with ME/CFS and Long Covid will often learn the hard way about how much they can endure at any particular time and the rest they need to compensate. Health professionals should listen to their patients, learn from their experiences, and tailor management to be realistic to that person’s abilities. They should be flexible in their approach and should not apply the same approach to everyone or believe that continued disability is a result of deconditioning and that exercise is the answer.

Post-exertional malaise

Post-exertional malaise is for many the defining symptom of ME/CFS. This basically means that if a person tries to do more than they are able (through mental or physical exertion), the intensity of their symptoms will increase as a direct result leading to setbacks or relapses.

Research confirming the presence of PEM as a key clinical feature of ME/CFS, has been carried out by several teams in America using Cardio-Pulmonary Exercise Testing (CPET) and this has shown that the aerobic energy system does not work properly and that exercise can provoke ME/CFS symptoms.

With appropriate convalescence and careful management, it is possible for an individual to experience more stability in symptom severity and fluctuations. They might even show signs of improved functional ability allowing greater – if still limited – freedoms.

Understanding the principles of PEM can allow more activity and less need to rest as an individual’s ‘energy envelope’ expands. But health professionals need to recognise that this is not true of everyone’s experience.

For many with ME/CFS, increasing the ability to carry out daily activities such as dressing, improving personal hygiene, preparing meals, and becoming more independent etc. will be necessary priorities before any other activity is even contemplated.

If an individual no longer has PEM then they should review their ME/CFS diagnosis with a doctor. It is not clear of the extent to which PEM is a key component of Long Covid, although from the feedback we have received it would seem to be part of the symptom presentation for a lot of people.

Research into Long covid

We would welcome more research that aims to identify the extent of any overlaps between ME/CFS and Long Covid as well as research examining any related biological abnormalities common across post-viral fatigue syndromes.

More information

• MEA FREE Leaflet: Early and Accurate Diagnosis
• MEA FREE Leaflet: Long Covid & Management
• MEA Leaflet: Energy Management & Pacing

N.B. We will shortly be providing a comprehensive update to the Long Covid & Management leaflet, and all relevant MEA leaflets will be updated following final publication of the new NICE clinical guideline on ME/CFS (18 August 2021).

 © The ME Association