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

Wow.

Plus ça change..

 

What I would like them to help achieve is:

1. More and better quality research to develop diagnostic tests and effective treatments. To help achieve this I think we need appropriate ring-fenced funding for high-quality ME/CFS research, among other things.

2. Improved services based on what is actually known about ME/CFS (including the NICE gl).

3. Formal recognition from the Government of the systemic failures which have resulted in the mistreatment of people with ME/CFS.

 

This is what I'd personally like to see from a group of sympathetic politicians:

* To push DHSC, NIHR, etc to make up for years of under-funding by ring-fencing a sum of money for biomedical & epidemiological research of very high quality and congruent with patient priorities.

* To pressure DHSC and NHS England to do everything they can to ensure that all NHS clinics adopt the NICE guideline and also for those members that are MPs to pressure the leaders of the NHS trusts in their own constituencies to deliver better, NICE-congruent services that treat patients with respect and dignity and not based on preconceived theories; at the moment we have a postcode lottery with a patchwork of services, many of which are terrible and some areas have no provision at all.

* To establish links with sympathetic politicians in the devolved nations' parliaments & assemblies to help press for better services in the other nations as well (as I understand it Scotland has recently lost their only ME/CFS nurse practitioner).

* To push for a more considered approach across the NHS to very specific problems that affect severe and very severe cases, such as better help with mobility issues - local NHS wheelchair services, for instance, often refuse to help pwME - and in particular the gastroenterological problems often associated with very severe ME that require artificial nutrition. Politicians are well-placed to pressure the DHSC, NHSE and those in charge of local NHS Trusts to take a more pragmatic and sensitive approach that would help prevent future tragedies.

* To commit to raising awareness, including patients' voices, and holding those in power - both in politics and in the medical establishment - to account.

 

This certainly sounds not right and unusual.

Is the norm to have these things 'open' and is that what is used for the LC one for example and how does that help and work?

I'm intrigued to learn about what is the norm for APPGs, particularly if there are any that are operating really well and/or something that is achieving something.

I can, however, see how both leaving a gap/not having one and the alternative of having one that isn't functioning or isn't in our interests particularly could have a significant impact. It's tricky to know given 'the prevailing winds' surrounding many time periods in ME how much APPGs and their functions impact this one way or another.

 

I saw somewhere (MEA I think) that prior to the election they were just starting a report into severe ME which could be important for policy making in the wake of Maeve's inquest. I'd have liked to have contributed somehow but couldn't see a way.

One other thing that disturbed me was to hear that there was also a LC APPG but the two had absolutely nothing to do with each other that really needed to change given the overlap and shared needs of the two communities.

I'd also be keen to see a new APPG back the #ThereForME campaign, which looks well constructed to me.

 

As we don't yet have much on which to base a big high profile research study, I'd like the APPG to push for the basic groundwork on ME/CFS to be done.

We don't know:

• how many people have ME/CFS;
• what proportion of those who develop post-infection syndromes are still affected two and five years later;
• what effect Covid-19 has had on the numbers of people with ME/CFS;
• what proportion of patients are able to maintain long term employment;
• how many have a relapsing/remitting pattern, how many have symptoms that fluctuate but rarely get drastically worse or better, and how many have gradual decline;
• whether there is a group that recovers after more than five years of illness;
• what proportion need aids and adaptations;
• what proportion need some carer support;
• how many severely affected people there are across the four nations, who might be at risk of needing significant care if something tipped them into the very severe category;
• what the economic costs are of ME/CFS.

How can we plan health and social care provision with gaps like this? If a disease modifying treatment came along that couldn't be delivered in primary care, how would we manage it? If we're looking at the bald economics, where does ME/CFS sit on the list of healthcare concerns that force young people out of work for good, leave a proportion of them dependent on benefits, and mean they're unable to fulfil other economically important roles like caring for parents in old age?

 

Following the July 4th General Election and House of Commons summer recess, there is no register of current APPG groups, as groups will need to reconvene in September. However the most recent register, as it had stood at 30 May 2024, listed in the region of 460 interest groups plus a substantial number of Country groups:

https://publications.parliament.uk/pa/cm/cmallparty/240530/contents.htm


The pages for individual groups list the group's Officers, contact details, whether there are registrable benefits received by the group or not, who provides the Secretariat (which may be an organisation rep who is not a member of the group), but do not note whether an individual group has been constituted to permit attendance by members of the public.

So unless one were to visit all the groups' websites or check their meeting minutes, it's not possible to say what is "the norm", that is, how many of the 460 odd interest groups do permit members of the public to attend and contribute to meetings, or to attend by invitation. But some groups (as was the case with the APPG on ME up until 2010) do permit members of the public to attend their meetings. All those attending the APPG on ME meetings were expected to sign a register and their names appeared in that meeting's minutes.

Some APPG groups also have representatives from industry and lobby groups regularly attending meetings and receive often substantial sums in funding.


I don't see an APPG specifically for Long Covid on the English Parliament Register as it stood at 30 May 2004 and the group for Coronavirus was last registered in June 2023 and appears to no longer be active.

Those involved in the Scottish cross party group on Long Covid, including Non-MSP meeting members, are listed here:

Involved in the group

MSPs, individuals and organisations who participate in and support this group:

https://www.parliament.scot/get-inv...ps/current-cross-party-groups/2021/long-covid

 

Note also that:

https://www.parliament.uk/globalass...ide-to-the-rules-approved-on-18-july-2023.pdf

"Guide to the Rules on All-Party Parliamentary Groups Approved by the Committee on Standards on 18 July 2023

"8. Groups may include non-parliamentarians as external members, and may charge them a subscription or membership fee, but they must not have voting rights."

 

To give an idea of how many organisation reps and members of the public used to attend APPG on ME meetings:

https://meagenda.wordpress.com/2009/06/15/appg-on-me-minutes-and-transcript-meeting-1-april-2009/

Minutes of the meeting of the All Party Parliamentary Group on M.E.

held at 1.30-3pm, Wednesday 1 April 2009

Committee Room 20, House of Commons

Present

Parliamentarians

Dr Desmond Turner MP (Chair)
Andrew Stunell MP (Vice Chair)
Peter Luff MP

Parliamentary office representatives

Koyes Ahmed, office of Dr Turner MP
Ceri Finnayson, office of Edward Davey MP

Secretariat
Sir Peter Spencer (Action for ME)
Heather Walker (Action for ME)
Tony Britton (MEA)

Organisations and individuals

Dr Derek Pheby (ME Research Observatory)
Kirsty Haywood (Royal College of Nursing)
Sue Waddle (MERUK)
Paul Davis (RiME)
Jane Colby (Tymes Trust)
Doris Jones (25% Group)
Joy Birdsey (K&SAME)
Jill Cooper, Warks
Stephen Jones
Augustin Ryan
Alan Gold
Annette Barclay
Joan Duvey
Michelle Goldberg
Jill Cooper
Samantha Brown with Max Cotton (BBC Politics Show)

Apologies:
Parliamentarians: Anne Begg MP, Angela Browning MP, Andrew Dismore MP, William Etherington MP, Kelvin Hopkins MP, Dr Brian Iddon MP, Ann Keen MP, Kerry McCarthy MP, Iris Robinson MP, Rudi Vis MP, Countess of Mar, Lord Puttnam

Non-parliamentarians: Dr Charles Shepherd, MEA, Christine and Tanya Harrison, BRAME, Janice and Bill Kent, Member, Janet Taylor (Kirklees Independent ME Support Group), Ciaran Farrell.

-----------------------

At one point, verbatim transcripts of meetings were also provided by AfME.

 

Just a thought - if David Puttnam has an interest in ME, he might be able to make a TV series/film/documentary happen.

 

Press interviews David Puttnam gave years ago were not very helpful to us. He mostly spoke about his depression in one interview, emphasized how helpful 5 years of CBT was for his depression and seemed to conflate depression with his ME or CFS' in that interview. He has said that 'The disease returns between three and eight times a year for around three days at a time'

https://www.theguardian.com/society/2004/apr/27/health.broadcasting



He also attributed ME to his overwork and stress, as well as to a virus.

'Five years of cognitive therapy have given him self-knowledge. "It helped me understand the illness, but also the way in which I may have been partially responsible for creating it.'

https://www.theguardian.com/film/2004/apr/27/healthandwellbeing.health
.


David Puttnam Retired from the Lords in 2021.

.

 

He'll be in his 80s, so probably retired from most work by now.

 

Would you feel able to share your full email? my MP has previously shown an interest in ME. and I have wondered about writing to him. but havent for two reasons - I am severe/v. severely affected and and can have difficulty with writng/typing at times as well as having severe cognitive issues/ brain fog. And also he does have what I think looks like a job/role in the new government which would possibly keep him very busy. but it may be worth writing to him ? maybe.
thanks.

 

If it helps I recently emailed my MP and kept it very simple… Now you’re in government what do you plan to do to improve healthcare, social care and research for people with ME. I’ve tried to be more lengthy and persuasive in the past but sometimes one or two simple questions does the job, especially if that’s all you are up to.

 

the one u sent to the lord in the HOL. Ach ..Sorry he was an old friend , so there were maybe a few emails. no worries.
If there were a few - asking about him joining the APPG etc and about ME . I would probably get confused
very easily done !