APPGs should collaborate on ME and Long Covid

Dear Ms Monaghan and Ms Moran,

I am writing on behalf of #MEAction UK and #MEAction Scotland to you in your roles as Chairs of the All Party Parliamentary Groups on ME and Long Covid. Firstly, we would like to thank you for the huge efforts that you, both personally and through your All Party Parliamentary Groups on ME and Long Covid, have made to highlight the major issues which people with ME and people with Long Covid suffer from. It has brought a spotlight onto the need for urgent actions to address the dreadful situations these people find themselves in.  

You will be aware that, since May last year, #MEAction and others have been highlighting the risks of long-term illness, such as ME, following on from Covid-19. This was based on various studies of viral infections, including SARS, and the worryingly high percentage of Covid-19 patients who remained ill many months later. Research suggests up to 80% of ME cases started with an infectious illness. Although people with ME themselves need support and treatment especially during the pandemic, #MEAction is campaigning to ensure that Long Covid patients are given the support and advice necessary to reduce the likelihood of developing ME, as we are all too aware of the misery that this brings.

We wish to highlight three areas of policy which need addressing immediately and where we hope that an integrated approach between the two APPGs will be taken.

1. Graded exercise, post-exertional malaise and NICE guidelines

The NICE guidelines on ME are being revised to address the harm done to people with ME by prescribed graded exercise therapy (GET). Worryingly, it seems there are some health professionals in key positions who wish to inflict graded exercise on Long Covid patients without any regard as to whether they suffer from post exertional malaise (PEM). It sometimes seems as if there is no amount of personal evidence of harm that will stop this push to inflict graded exercise on people for whom it is clinically dangerous. As Ms Monaghan said in a parliamentary debate regarding the research trial that underpinned GET, “it will be considered one of the biggest medical scandals of the 21st century”.  

Thousands of people have given witness to the deterioration they suffered when doing GET and many are still significantly worse than they were before the GET. Sadly, some are confined to bed, are light and noise sensitive and possibly tube fed. Despite this, Dr Clare Gerada, ex-chair of the RCGP, said on the BBC on 29th January that “there is nothing that isn’t made better through exercise, OK, nothing. No matter what age, what condition, exercise will always improve it.”.

We ask the two APPGs to inquire into:

• why the scoping for the NICE guideline on managing the long-term effects of Covid-19 excluded evidence about ME; 
• why this guideline does not advise caution with exercise despite the increasing evidence that many Long Covid patients are suffering from symptoms similar to ME, especially post exertional malaise;
•  why the guideline does not reference post exertional malaise, despite this and fatigue being two of the most common symptoms reported.  

#MEAction UK asks the APPGs to consider the significant evidence which was excluded from the guideline and raise the issue in Parliament.

2. NHS Your Covid Recovery – misleading guidance

The second issue, which relates to this, is that the NHS national guidance online, Your Covid Recovery, gives very misleading and potentially dangerous advice.  There is no discussion of the various sub-types of Long Covid illness and the difference that having post exertional malaise must make to the advice given on exercise. On the contrary, the “Fatigue” section states, “Low levels of physical activity, a disturbed daily routine, poor sleep patterns, demanding work, caring responsibilities, low mood, anxiety and stress can all make fatigue worse.”

Under “Your well-being/getting moving again”, Your Covid Recovery states,

“How will I know if I am less fit than I was?

• You will find doing everyday jobs that you used to do easily, tiring.
• Walking up and down the stairs may make your legs ache and you may be quite short of breath.
• Going for even a short walk, is exhausting.

 “Why is doing some exercise important?

• By being active and starting some exercise you become stronger and fitter. You may notice your tiredness increase and some breathlessness at first but these should improve the stronger you get; this is a normal response to doing more exercise for all of us.

“You should aim to build up to 30 minutes of activity at least five days a week, but this is not going to happen at the beginning of your recovery

“Remember the less you do, the less you will want to do and the less you will be able to do.”

This section finishes with “Please read this before starting –

Following this, activity and exercise advice, is at your own risk. You are agreeing to undertake these activities voluntarily and as such assume all risk of injury to yourself.”

Harm caused by prescriptions of exercise is not reportable or recorded and this has been an ongoing “get out of jail free” card for decades for health professionals who inappropriately advise exercise to people with ME. The same avoidance of responsibility is now being put in place, with potentially disastrous effects on people with Long Covid. There is no redress for people with post exertional malaise who are damaged by this advice. If this was a medication, it could be reported to the Yellow Card scheme.

#MEAction UK therefore asks you to write jointly, as chairs of the ME and Long Covid APPGs, to the management of NHS Your Covid Recovery, requesting they rewrite this guidance with patient and public involvement. 

3. Children and young people

We were delighted to see, in the Long Covid parliamentary debate, discussion of children and young people with the condition. Children and young people with ME suffer not only from the illness themselves but from a particularly harsh isolation. They very often receive almost no support from schools or the educational system. Most of these young people have been unable to access any help with their education which then affects them for life. Now, in the Covid-19 pandemic, there has been much welcome discussion about how all pupils can get educated at home, whether they have access to online lessons, etc. This is a far cry from what has happened to date for children with ME and the depressing contrast has not been lost on the ME community. Of course, we are delighted that the country has shown itself able, at last, to step up to providing online teaching. It must be remembered that not all children can access online work and other methods should also be provided where needed. We hope the steps and methods taken over the last year lead to a different approach for children and young people with ME and Long Covid. But there is a very real risk that the attitudes towards such children will return to that of previous years – one of “out of sight, out of mind”, prejudice and neglect.

#MEAction UK asks that, as schools return to in-person teaching, your APPGs work collaboratively to ensure those children with ME and Long Covid receive appropriate educational support, including continued online education where required.

We realise that we have raised several difficult issues but the work of the APPGs has given many people with ME and Long Covid real hope – something many have waited decades for.  We would be delighted to take part in any meetings or provide further information,

Yours sincerely,

Helen McDade,

On behalf of #MEAction UK