Part 4.  Worcestershire County Council SEND, TYMES TRUST, and All Party Parliamentary Group (APPG) on SEND
 
Welcome to SENDIASS Herefordshire and Worcestershire
Special Educational Needs and Disabilities (SEND) Information, Advice and Support Service (IASS) covering Herefordshire and Worcestershire.
 
Listed under ME/Chronic Fatigue Syndrome   in the Worcestershire County Council SENDIASS support *A - Z*
Information

• Website: The ME Association
• Website: Tymes Trust

 
 
TYMES TRUST’s four page pdf
Response to the DoHSC Consultation Interim Delivery Plan on ME/CFS, begins with TYMES Trust appreciates the time and dedication of everyone contributing to and compiling the DHSC My full reality: the interim delivery plan on ME/CFS.  For too long this devastating illness has been shrouded in controversy; far too many Children, Young People and their Parent/Carers (and some professionals) have been harmed by ignorance and misunderstanding of the illness, resulting in inappropriate medical care, social care, education provision, child protection proceedings and professional gaslighting.
 
The recent changes within the NICE guidelines, and this UK Department of Health and Social Care Interim Delivery Plan on ME gives us some long-awaited hope; however, we have some reservations and comments.  Overall, the plan is positive, and the crucial task of re-education (if implemented appropriately) will certainly support system improvement and support professionals to deliver individualised, quality, care and understanding to those living with ME.
The needs of children and young people are different to those of adults. Ideally, discussions and planning for children and young people should be progressed as an independent section within the Interim Plan.  The changes within the plan need to be implemented with a sense of urgency to avoid further harm and subsequent declining health for our children and young people as ME has a huge negative impact at such a vulnerable stage of life.
 
TYMES TRUST also list their recommendations, including the fact that “a firm diagnosis of ME is needed as early as possible to ensure protection from disbelief and needless pressure from education and Social Services.”  TYMES Trust concurs with the comments and responses of their fellow Forward ME members including The ME Association, 25% Group, BRAME , ME Research UK.
 
 
All Party Parliamentary Group on SEND.  The Inaugural meeting of MPs to re-establish the All Party Parliamentary Group (APPG) on special educational needs and disabilities (SEND) took place on Wednesday 16 October 2024. It was standing-room only due to the level of interest from MPs and a long list of others who couldn’t attend but wish to be members of the group.
 
We are pleased to confirm that NAHT will again be providing the secretariat for the group. Olivia Blake MP was duly re-elected to chair of the group, along with Greg Stafford MP, Shockat Adam MP and Jen Craft MP, who were elected as vice-chairs,with a full list of 42 MP members.
The meeting discussed the previous work of the group, focusing on the importance of early intervention and had a brief discussion about next steps. The meeting was cut short by the division bell during a busy day in parliament.  The group will now be re-registered as an APPG and we will be arranging next steps and will keep you all up to date with progress and details of future meetings.  The officers of the group are now as follows:

APPG officers
Olivia Blake, Labour, Sheffield Hallam
Greg Stafford, Conservative, Farnham and Bordon
Shockat Adam, Independent, Leicester South
Jen Craft, Labour, Thurrock
 
The membership of the group are listed with this announcement, and include Chris Bloore, MP Redditch.

• You can follow the APPG for SEND on X via @appg_send
• To join the APPG for SEND mailing list, please click here
• If you or your organisation would like to speak at an upcoming meeting of the APPG for SEND, please express your interest here

•  A.P.P.G  •  Children  •  Forward ME  •  Government U.K.  •  M.E. Association  •  MP  •  N.I.C.E.  •  Tymes Trust  •  Worcestershire County Council  

Part 3.  Inaugural Meeting of the All Party Parliamentary Group (APPG) on M.E.
 
 
Action for ME (AfME) report following the recent APPG on ME meeting 
APPG on ME is now formally registered
December 20, 2024
 
On Tuesday evening, the inaugural meeting of the All-Party Parliamentary Group was held and we're pleased to announce that the APPG on ME is now formally registered!.  Jo Platt MP was unanimously confirmed in appointment as Chair, by the Group.
Following this, a discussion was held on the APPG's purpose and to suggest priorities for the upcoming year, which included relaunching the inquiry into severe ME that the previous APPG was unable to complete, due to the General Election.  Members will now need to consider the suggestions and identify next steps.
 
Speaking following the meeting, Action for ME Chief Executive, Sonya Chowdhury, said:
"I want to start with a thank you to all those who took the time and energy to write to their local MP, encouraging to attend the meeting.  Thank you also to all the MPs who have pledged their support to people affected by ME by being a part of this APPG and a special thank you to Jo, for Chairing this group.
I'm really excited by the potential this Group holds to create real change for people with ME and very much look forward to working with them moving forwards."
 
The full minutes can be viewed, alongside a meeting summary, on the APPG's website.
Action for ME provides the Secretariat to the APPG; this is joint funded by the ME Association
 
 
Extract from ME Research UK (MERUK)’s report following the recent APPG on ME meeting.
New All Party Parliamentary Group on ME formed 24 December 2024
 
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) is a cross-party group of Members of Parliament and the House of Lords seeking to improve health, social care, education and employment opportunities for people with ME and accelerate biomedical research into the cause and treatment of ME.
draft Minutes of APPG 17 Dec 2024
 
Forming an All Party Parliamentary Group is not simple but is highly beneficial to a cause to have a forum where legislators and interested parties can meet and act within the seat of government.  On 17th December 2024 a new APPG on ME held its inaugural meeting and was subsequently entered on the Register of APPGs.  MP Jo Platt was proposed and confirmed as Chair - office bearers being Tessa Munt MP, Lord Offord of Gavel, and Debbie Abrahams MP and members being MPs Bradley Thomas, Louise Jones, Luke Charters, Rachel Maskell and Paul Waugh together with a member of the House of Lords - Baroness Scott of Needham Market.
 
The MERUK report also gives “Areas of action as recorded in the draft Minutes encompass”.
 
•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MERUK  •  N.H.S.

Part 2.  House of Commons Health and Social Care Debate, and Parliamentary written response.
 
 
The ME Association (MEA) report from the House of Commons Debate: Health and Social Care
January 10, 2025
Below is a response to a question from MP Jo Platt (Labour/Co-operative, Leigh and Atherton), newly appointed chair of the All Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME).
 
Andrew Gwynne, The Parliamentary Under-Secretary for Health and Social Care
My hon. Friend raises a really important point. NHS England is due to complete a stocktake of long covid services throughout England at the end of this month. That will provide an accurate in-depth overview of not only long covid services but ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome - services.
The stocktake will provide a comprehensive and accurate national picture, identify key challenges and make strategic recommendations for future service improvement, development and assurance.
 
MEA’s Comment
We hope that this ‘stocktake' and strategic review of Long Covid and ME/CFS specialist service provision in England, will complement the Final Delivery Plan on ME/CFS and the work we have been doing with ICBs and local services to try and ensure sufficient funding is available to make the improvements which are necessary to fully comply with the NICE Guideline recommendations.
 
 
Last month Andrew Gwynne, The Parliamentary Under-Secretary for Health and Social Care, mentioned the Final Delivery Plan on ME/CFS when he gave a written response to Tessa Munt MP.
 
Answered on 19 December 2024
We are committed to improving the care and support for people with myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome. We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.
 
We published a summary report of the responses to the 2023 consultation on the interim delivery plan on 19 December 2024. The responses to that consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan, which we aim to publish by the end of March 2025. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
 
The report is available at the following link:
Improving the experiences of people with ME/CFS: consultation outcome

•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MERUK  •  N.H.S.

Consultation Released, Health & Social Care Debate and APPG on M.E.
 
Part 1.  Interim Delivery Plan on ME/CFS Consultation Released.
 
The ME Research UK (MERUK) fully explain Details of Consultation on Interim Delivery Plan released
24 December 2024
October 2023 saw the conclusion of the consultation phase on the UK Department of Health and Social Care (DHSC) ‘My full reality: the interim delivery plan on ME/CFS‘ . ME Research UK commented fully on the provisions as they relate to research and the limitations the charity saw in the plans.
 
3,338 responses were received -

• 47 were from organisations – including the views of ME Research UK
• 3,113 were from individuals sharing their personal views
• 53 were from individuals responding on behalf of someone else
• 125 were from individuals sharing their professional views

 
Such were the number of responses that the DHSC has taken over a year to analyse the results but these were released online on 19 December 2024 as ‘Improving the experiences of people with ME/CFS: consultation outcome’ and covers the areas of the draft Delivery Plan namely

• research
• attitudes and education
• living with ME/CFS
• language used in relation to ME/CFS

 
The MERUK’s detailed article also gave information on -
Responses relevant to Research;  Funding;  Strategy  - including calls for a centralised database of research and a centre for research excellence, as proposed in the 2022 All-Party Parliamentary Group report;  Research capacity;  Research scope;  Patient involvement;  Actions.
 
MERUK Conclusions
 
ME Research UK is pleased to see that so many of the threads of our response have been echoed by other respondees and feature in the list of most commented and supported. The stronger the calls for focused and well-funded biomedical research into the causes, consequences and treatment of ME/CFS the more likely it is that government will need to re-think, re-focus and ACT.
 
That ring-fenced funding, prioritisation of biomedical research, and need to encourage and retain researchers in the field has been taken up chimes with the charity’s step-by-step approach.
Research into ME/CFS cannot be left to patients to fund. Attitudes within central funders must change and only the government can dictate and demand that this happens. If the results of the consultation are translated into a strengthened and improved Delivery Plan then real change may occur but we must all await publication of the final Delivery Plan due in March 2025. As the government web page says “this document summarises the consultation responses only and is not intended to announce new government actions on ME/CFS.’
That being said, although the Key Actions are to be welcomed the Six actions proposed in the IDP appear weak and unlikely to produce the transformational change needed to achieve the research goals. These actions must be strengthened to align with the clear demands of the responses and to give the outcomes outlined in the Key Actions a chance to be realised.
 
 
The ME Association announced -
The Department of Health and Social Care (DHSC) publishes the outcome of the consultation process for the DHSC Delivery Plan on ME/CFS,
December 20, 2024
Dr Charles Shepherd of the The ME Association states:
This document summarises the consultation responses.  Please note that it is not intended to be an announcement of any new government actions on ME/CFS.
The consultation responses, alongside continued stakeholder engagement, will inform the development of the final Delivery Plan on ME/CFS.  The DHSC aims to publish the final version of the Delivery Plan by the end of March 2025.  The final Delivery Plan will be co-produced with stakeholders, through the ME/CFS Task and Finish Group.
According to the DHSC this will involve careful consideration of the consultation responses and the assessment of the feasibility and viability of the proposed actions.  There is a lot to read here and I have only just seen this ministerial announcement - so I will comment further when I have had time to go through it properly.
Dr Charles Shepherd, Hon Medical Adviser MEA

•  Action for ME  •  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MERUK  •  N.H.S.

Please join us, at our Afternoon Café Meeting on Wednesday, 8 January, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
All people with M.E., CFS, FMS, Long Covid, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us whenever it suits you.
(*should there be snow on this date it will be cancelled).
 
Future Afternoon Café Meetings will also be on the 2nd Wednesday of each month, from 2.00 - 3.30 pm, at the Next Café.  Further information with all 2025 dates listed is available on our Meetings page.

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