UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

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https://www.facebook.com/actionforme/photos/a.76870643208/10158789285108209/

 

From an MEAction email.


APPGs should collaborate on ME and Long Covid

#MEAction UK has written to the chairs of the Coronavirus All Party Parliamentary Group (APPG) and the Myalgic Encephalomyelitis APPG requesting they collaborate. We have highlighted 3 specific areas of overlap that could benefit from a collaborative approach:

1. Graded exercise, post-exertional malaise and NICE guidelines
2. Misleading and potentially dangerous advice from NHS Your Covid Recovery
3. Children and Young People with ME or Long Covid

Read our letter below.


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

 

The Annual General Meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) will take place on Monday 19 April between 11:00 – 12:00.

In addition to AGM business, this meeting will focus on the impact of the COVID-19 pandemic on the ME community.

Points of discussion will include the clinical and pathological overlaps between ME and Long Covid, the COVID-19 vaccination programme and JCVI guidance for ME patient prioritisation, and the general challenges facing the ME community at this difficult time.
...
If you have an issue relating to COVID-19 and ME that you want to bring to the attention of your MP, or want to encourage your MP to attend this meeting, please contact your MP direct from this link.

https://meassociation.org.uk/2021/0...the-impact-of-covid-19-on-people-with-me-cfs/

 

"UK #pwME, ask your MP to attend. Use members.parliament.uk/FindYourMP to find the contact details for your MP and send them a message explaining why you feel it is important they attend. Don't forget to include your address so that they know you are a constituent of theirs."

 

Olivia Blake MP on Twitter.

"Great meeting with the APPG on ME/CFS this morning to discuss the impact of #COVID19 on people with ME. Thanks to the excellent speakers for their talks on the clinical overlaps between ME & Long Covid and JCVI guidance for ME patient prioritisation. @MEAssociation"

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https://twitter.com/_OliviaBlake/status/1384163721488994307

 

Next meeting of the All Party Parliamentary Group on ME – the new NICE guideline

The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 – 3 pm on 24 November 2021.

This meeting will focus on the new National Institute for Health and Care Excellence (NICE) guideline on ME and the future of ME medical care.

Three expert guest speakers will address the APPG and answer questions:

Dr Paul Chrisp, Director of the NICE Centre for Guidelines
Dr Peter Barry, Chair of the NICE ME/CFS Guideline Committee
Sonya Chowdhury, Chief Executive of Action for ME

This meeting will be an excellent opportunity for MPs and Peers to discuss the new NICE guideline which is expected to be transformational for ME patients across the UK due to the removal of support for damaging treatments such as graded exercise therapy (GET).

More at https://meassociation.org.uk/2021/1...iamentary-group-on-me-the-new-nice-guideline/

 

Thanks for the details @Andy .
I have just written to my MP asking him to attend. The Speakers look interesting.

 

I've just written to my MP Scott Mann to ask him to attend.

 

current membership of the APPG for ME
https://publications.parliament.uk/pa/cm/cmallparty/211006/myalgic-encephalomyelitis-me.htm

interesting that Caroline Lucas is not on it given her support for the Sussex and Kent ME society who opposed the New guidelines.

 

Maybe, but as the sole Green MP she will have multiple Westminster demands on her time and the number of APPGs is huge, she seems to be or has been on several APPGs that cover Eco issues. As a general measure, that an MP isn't on a particular APPG probably doesn't say much about their position on that issue, only that there are other things to which they give priority.

List of current APPGs: https://publications.parliament.uk/pa/cm/cmallparty/211006/contents.htm

 

Did she do this by default/is it that she doesn't know anything about it?

She is probably busy; I hope it's that!

 

This is some correspondence with NICE* - I've been trying to challenge NICE's use of GRADE directly and indirectly (NICE uses Cochrane reviews and Cochrane uses GRADE to prouce those reviews).

The ME/CFS APPG should be a way to influence NICE's use of GRADE/Cochrane so I've copied these emails to the ME/CFS APPG and the covid APPG (the same flawed research/same researchers appears to be used in covid).

So the ME/CFS APPG & covid APPG may be aware of the issue of NICE's use of GRADE/Cochrane and hopefully will raise concerns.


"Katy [NICE],
Thank you for your email and apologies for my delay in replying.

Re your comment that "The wording of the enquiry suggests that the Cochrane review mentioned is of psychological interventions.". Yes, i.e. the deconditioning and exercise intolerance (psychological) theories of ME/CFS.

In my email I stated that:
"NICE's use of Cochrane reviews also creates a risk for those with Long covid, and Lyme disease, i.e. since "low and very low quality" evidence will be considered "moderate" quality - suitable evidence to support the use of psychological interventions like CBT."

Cochrane uses GRADE and my email should have stated that "the use of GRADE either directly by NICE, or indirectly through the use of Cochrane, creates a risk that unreliable evidence will be used to recommend treatments like CBT and exercise". The Cochrane review you refer to illustrates the issue [Note 1]; it states that "Exercise therapy probably reduces fatigue at end of treatment --- moderate‐certainty evidence---" --"The estimate remains consistent with a non‐zero effect size". Firstly, the studies evaluated in this Cochrane/GRADE review are unblinded and use subjective outcome criteria i.e. they are unreliable as an evidence base for treatment recommendations. One of the studies was supposed to include objective outcome criteria (actimetry) i.e. White 2011 - PACE trial [Note 2]. However, actimetry was, in practice, only used to collect baseline data i.e. the post intervention assessment relied on subjective outcomes. In addition this Cochrane/GRADE review has no clinical relevance since it examined whether there was a "non‐zero effect" from exercise therapy - not whether there was a clinically meaningful effect.

Regarding the use of subjective outcome criteria, versus objective outcome criteria, in assessing physical activity, studies have shown that subjective outcome criteria are unreliable [Note 3].

In his expert witness testimony to NICE Professor Jonathan Edwards set out the issues with the available evidence base re CBT & exercise [Note 4].

Another issue, which compounds the problem of using GRADE, is that once NICE has adopted a guideline then it is very difficult for the patient community to challenge it i.e. even if the evidence base is unreliable. In theory a guideline can be challenged by judicial review (JR); however, the very high bar in proving that a guideline is "unreasonable" means that JR is unlikely to succeed.

Finally I would like to thank the NICE Committee which produced the recently published ME/CFS guideline and indeed others in NICE who contributed to the delivery of this guideline.

Regards and happy to discuss further,
Xxxx

Note 1 - https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full
Note 2 - [https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext
Note 3 - e.g. [https://pubmed.ncbi.nlm.nih.gov/30670036/].
Note 4- [https://www.nice.org.uk/guidance/ng206/documents/supporting-documentation-3].

 

"The next meeting of the All-Party Parliamentary Group (APPG) on M.E. with be the Annual General Meeting on Tuesday 29 March 10:00 – 10:30. We'd be really grateful if you could invite your MP to attend. It will be a Zoom meeting and your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).

In addition to reconstituting the APPG, the AGM will include a discussion on our work plan for the next year in relation to the APPG purpose: to seek to improve health, social care, education, and employment opportunities for M.E. sufferers and encourage biomedical research into the cause and treatment of M.E.

Action for M.E. and The ME Association have agreed to take on the secretariat responsibility for the APPG and will be working to ensure future minutes and announcements are published promptly."

https://meassociation.org.uk/2022/0...liamentary-party-group-appg-for-m-e-29-march/

 

10.00 - 10.30? Is that the starting time? It seems awfully short if it's the length of the AGM!

 

I'm impressed by the Coronavirus APPG website (https://www.appgcoronavirus.uk/). It looks like Best For Britain are providing the secretariat, and the fancy website, which is interesting.

The ME Association and AfME have just confirmed that they are continuing to provide the secretariat for the ME-APPG, and I'm thinking of writing to ask that a new website is set up. The old website (pre-2010) is here: http://www.appgme.org.uk/, and a page on the AfME website is now dead (https://www.actionforme.org.uk/make...tion-now/all-party-parliamentary-group-on-me/).

We need a suitable, up-to-date website or webpage.

 

There have been long and detailed discussions today on LocalME about APPG and the lack of website/agenda's and minutes availabilty.
I have drafted a letter to my MP. DR Dan Poulter but held off sending it until I read last AGM and meeting's minutes.

APPG Vice Chair Ros Scott- local to me in Suffolk- has replied to me about this.
It may be because Carol M might have been overwhelmed by recent events and it has been left hanging a biy. (national and international events?)

This was made available today.

https://www.mefoggydog.org/2021/11/...-so-difficult-to-see-what-has-been-discussed/

 

https://onedrive.live.com/?authkey=!AGlC5G370Oiz4-8&id=BF7ACC05412B947D!688083&cid=BF7ACC05412B947D

Historical minutes for 2020–2021 meetings, uploaded by a patient (more here: https://www.mefoggydog.org/2021/11/...-so-difficult-to-see-what-has-been-discussed/).

I've sent these to AfME and asked that they be put on the APPG section of the website, which is now part of this page: https://www.actionforme.org.uk/research-and-campaigns/campaigning-for-change/me-in-parliament/