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

I've been following this up with Sonya, and I am getting the impression that there has been an active decision not to publish the meeting minutes, and that this has come from Carol Monaghan.

I do not think we're going to see the historical minutes or future minutes readily and timely added to the MEA or AfME website.

EDIT: Further response from Sonya that they will try and resolve this.

 

vice Chair Ros Scott didn't seems to suggest any reluctance, however, we are not the only ones onto this as I previously said,


This was made available today.

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

 

From a ME Association Twitter post.

"All-Party Parliamentary Group on ME to launch report: ‘Rethinking ME’

The APPG on ME has announced a meeting on the 25th May 2022 to launch their first report titled “Rethinking ME”."

 

AfME on Twitter.

"MPs have been invited to APPG on M.E. event to launch new Rethinking M.E. report. Chair @CMonaghanSNP: "At this reception, we will reflect on the progress being made to improve recognition and understanding of M.E. amongst the medical profession and other relevant professions..."

"...We will hear directly from people M.E. on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.”

Event takes place Wed 25 May
#pwME #MECFS #LearnFromME

actionforme.org.uk/news/appg-on-m…"

 

Remind your MP to attend the launch of “Rethinking ME”

"The APPG Report “Rethinking ME” will be launched at an auspicious event at the House of Commons on May 25th. It will cover key issues of concern – research, management, NHS services, benefits, children, severe ME/CFS etc. – and will make a number of recommendations concerning action that needs to be taken to improve the lives of people with this condition.

Invitations have already been sent to all MPs and members of the House of Lords, but you can also remind your MP about the importance of this event, by sending an email using the template below (which can be suitably amended or added to if you wish to do so).

You may want to add a short note relating to a personal, local, or national issue of concern. This might include a diagnostic delay, a DWP benefits problem, issues faced by children, or by people severely or very severely affected, lack of a local ME/CFS specialist service, or the need for biomedical research – all of which are covered in the APPG Report."

https://meassociation.org.uk/2022/05/remind-your-mp-to-attend-the-launch-of-rethinking-me/

 

I've sent a slightly-altered version to my MP from my email account.

 

Pleased to see the APPG has a new website. https://appgme.co.uk/

 

Meeting starts at 3pm and AfME will be posting updates on Twitter.

 

Is it being recorded or livestreamed?

 

Thanks @Andy for the reminder. I have contacted my MP belatedly. I'm struggling to keep up. I have written to him frequently recently: so much is happpening.

 

Report is now available here, https://appgme.co.uk/publications/

 

Yes, see tweet below.

 

The report is good. My thanks to the people involved in making this happen.

 

https://twitter.com/user/status/1529475923501670402

 

Sometimes progress feels glacial, but looking back, I think it's safe to say that we've made major progress as a community over the past decade, and in the past 5 years in particular. The fight is not yet over, but the old paradigm is in an irreversible decline. May we soon have something more robust to replace it with.

 

For those not up to reading through here is the Executive Summary.


Myalgic Encephalomyelitis (ME), also sometimes referred to as Chronic Fatigue Syndrome (CFS), is a profoundly debilitating, chronic condition that affects multiple systems within the body.


The physical symptoms of ME, such as extreme pain, post exertional malaise, and cognitive dysfunction, make ME “as disabling as multiple sclerosis, systemic lupus erythematosus… and other chronic conditions”. Consequently, people with ME require high levels of service provision to be able to manage their condition well and live the lives they wish to.


This report looks at key areas of service provision where sensitivity to the nature of ME is required. These areas were investigated over the course of five APPG evidence sessions and in further correspondence with ME patients and relevant stakeholders:

(1) Biomedical Research and Research Funding
(2) Condition Diagnosis, Symptom Management and Medical Services
(3) Children and Young People with ME
(4) Welfare and Health Insurance-based Benefits
(5) COVID-19 and the ME community.


Across each area, the ME APPG discovered that a lack of understanding of the physiological nature of ME, and the challenges faced by people with ME, is widespread amongst health professionals and the general public. At present, many services fall short of the standard required to ensure that people with ME can access a prompt and accurate diagnosis and effective condition management. Misunderstandings and a lack of consensus on how to define and categorise the condition compound the medical challenges faced by people with ME and further hinder access to support in areas including social care, welfare, education and employment.


The removal of GET as a treatment for ME is a particularly meaningful step for the ME community.


The recent publication of the new National Institute for Health and Care Excellence (NICE) guideline on ME/CFS has the potential to bring about noteworthy progress with regards to medical care for people with ME. The removal of graded exercise therapy (GET) as a treatment for ME is a particularly meaningful step for the ME community. This decision followed many years of campaigning by people with ME who called out the detrimental effects of GET despite opposition from an influential minority within the medical profession.


It is evident that the voice of the ME community is beginning to be heard within health policy and decision-making. This development comes at a time when, amongst the general public, there is a new appreciation of what it is like to live a life in lockdown and a growing awareness of long COVID, a condition which significantly overlaps with ME. These factors have contributed to a growing momentum for transformation in the way that people with ME are treated in the UK.


Whilst the release of the new NICE guideline brings the prospect of meaningful change for people with ME, we have seen with other conditions, such as endometriosis, that a positive revision of the NICE guideline does not necessarily result in swift positive change to the standards surrounding condition diagnosis, treatment, and management. Therefore, the ME APPG is seeking a firm commitment from the NHS, UK and Devolved Governments that the new NICE guideline on ME/CFS will be swiftly adopted and implemented in full across the UK.


To ensure full implementation of the guideline recommendations, the ME APPG recommends that the UK and Devolved Governments each facilitate a comprehensive review of the adequacy of ME service provision falling within their jurisdiction.


The ME APPG recognises that even though the new NICE guideline goes some way to improving quality of life for people with ME, there are further issues that people with ME experience which the guideline does not, and cannot, address given its sole aim is to set out foundational principles for medical care. People with ME require major cultural and policy change to take place within all professions associated with their care and support. Accordingly, the ME APPG recommends that strategies are developed in each of the four UK nations to transform our society’s approach to ME. The APPG also makes a series of supplementary recommendations which are summarised on page 8 and expanded upon in further detail within Chapters 1 - 5.

 

And the Summary of Recommendations (click on each image to expand it).

 

What I read so far is pretty good, scathing, honest. It's easy to imagine how all of this could have fallen flat with the right opposition, but with the added context of Long Covid, this is such a right alignment of circumstances that we may have a chance to actually make progress. So much politicking must be happening behind the scenes.

I especially liked the direct blame on psychosocial ideology, although it will be interesting to see how it affects the healthcare system overall, as the entire NHS is completely beholden to the damn BPS ideology, all of IAPT is built on this, billions have already been wasted on it. Those goals are in direct opposition with one another, it's incompatible to dismantle the awful BPS ideology that ruined us while keeping it generally alive, and specifically IAPT.

Those are mostly the right words. Now: action. Let's see action.