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  

 NICE ME/CFS: Diagnosis and Management.
NICE releases details of ME/CFS roundtable meeting on 18 October.
NICE guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS) was paused on 18 August.
 
Ahead of the roundtable meeting on 18 October, NICE has today (12 October 2021) released details of the agenda and how the meeting will be run.
 
12 October 2021
Publication of the NICE guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) was paused after several professional organisations contacted NICE to say they had serious concerns about some aspects of the guideline.
NICE has invited representatives from a range of patient and professional organisations to discuss the concerns that were raised.
The discussion will be chaired by Dame Carol Black, who is independent from NICE and from the guideline development process. She will chair the discussion only and no decisions will be made at the meeting.
 
Following the meeting, minutes will be available and NICE aims to reach a swift decision on the future publication of the guideline.
Professor Gillian Leng, NICE chief executive, said:  “We understand that patient groups are anxious to see the guideline published as soon as possible.  We are holding this roundtable to explain how the guideline was developed and the rationale behind the recommendations made and to hear and understand the concerns that have been raised.  We hope there will be an open and honest discussion about these concerns to ensure that the final guideline will be effectively implemented across the system.”
The agenda for the meeting is as follows:

1. Introduction and rules of the meeting – Dame Carol Black
2. Guideline production at NICE - Dr Paul Chrisp, director of the Centre for Guidelines at NICE
3. Aim of the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline - Dr Peter Barry, chair of the ME/CFS guideline committee
4. Discussion of issues raised: diagnosis, graded exercise therapy, children and young people, and cognitive behaviour therapy.
5. Summary - Dame Carol Black.

 
In the House of Lords, on Tuesday 12 October 2021
The forthcoming NICE Guideline was discussed during a short "Health: Chronic Fatigue Syndrome" debate.
“To ask Her Majesty’s Government, further to the decision to delay the planned new guidelines on the Diagnosis and Management of ME/CFS, what assessment they have made of the ability of the National Institute for Health and Care Excellence to carry out its functions; and when they expect such guidance to be published.”
 
Also, this week, Action for ME gave Forward-ME’s update: Forward ME: upcoming NICE Round Table.
October 11, 2021
Update from Forward-ME on the upcoming round table event, hosted by the National Institute for Health and Care Excellence (NICE) next Monday (18 October), to "discuss key issues raised prior to publication" of its paused guideline for M.E.
Forward-ME and our members want to thank the many people with M.E., doctors and researchers who have contacted us to share concerns and frustrations around the delays to publication of the new NICE guideline for M.E.
Forward-ME has been invited to the round table and our following member organisations will also attend individually:

• Action for M.E.
• ME Research UK
• ME Association
• Science for ME
• The 25% ME Group
• The ME Trust
• Tymes Trust
• #MEAction.

Preparations for the round table mirror the issues raised by the M.E. community across social media. The charities are grateful for all the feedback we have received. The round table is an opportunity to ensure the rigorous work of the NICE guideline committee is understood by all care providers.
We are not attending to discuss changes. All Forward-ME members recognise the significance of the recommendations in the new guideline, which has been produced and approved in accordance with NICE’s rigorous procedures, and should be published. We share the frustrations over the delay, and are working to achieve urgent publication.
We look forward to updating the M.E. community in the days following the round table, and we hope this is accompanied by swift publication.
 
The NICE Guideline ME/CFS: Personal Observations 
by Dr Charles Shepherd, the MEA Hon Medical Adviser.
August 18, 2021
We should have been welcoming the arrival of a completely new NICE guideline on ME/CFS today. A guideline that acknowledged ME/CFS as a serious and complex medical condition. In fact, we had sent an embargoed press release and statement from Forward-ME to all the news-media in anticipation of its publication.
It was a guideline that contained sensible advice on activity, energy, and symptom management - along with a revised timeline and advice for early and accurate diagnosis, and it placed special emphasis on the care and management of children and young people and those who have severe or very severe ME/CFS.
Instead, we are discussing the huge disappointment felt by the patient community to yesterday's announcement from NICE to cancel publication today and to pause proceedings while discussions take place around objections to the new recommendations regarding CBT and GET - objections that were discussed and resolved as part of the long review process.
On a personal basis, having spent a considerable amount of my time over the last four years working with colleagues on the preparation of this new guideline, I feel frustrated and angry. The action of a small number of people who have persuaded the leadership at the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and possibly other Royal Colleges, to put pressure on NICE to reconsider what had already been agreed by the guideline committee, is reprehensible.
Dr Shepherd also explained that “the delay is unprecedented”, and described “What’s Next?”
 
The MEA’s FREE MEA NICE Guideline Leaflet provides essential extracts from the DRAFT GUIDELINE that will help you to understand the help and support that should be available from your local health and social care services.
 
 
Amongst the many articles on the MEA website, following the pause of the NICE Guideline.
 
Trial By Error:
An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline
September 16, 2021
 
Letter to NICE from UK charities and support organisations
September 6, 2021

A Letter Urging NICE to Publish ME/CFS Guideline Without Delay
September 1, 2021

•  25% M.E. Group  •  Action for ME  •  Forward ME  •  Government U.K.  •  #MEAction  •  M.E. Association  •  MERUK  •  N.I.C.E.
 •  Parliament U.K.  •  The ME Trust  •  Tymes Trust

ME Charities and APPG on ME write to Supermarkets & UK Government.

ME Research UK - letter explaining how things are for people with ME/CFS.

Letter sent to major supermarket chains and UK Government from UK ME charities and the All Party Parliamentary Group on ME
Posted on 27 Mar 2020

We are writing on behalf of the adults, children and young people we support who have Myalgic Encephalomyelitis (M.E.) (also known as Chronic Fatigue Syndrome, or CFS), asking for your help.

The Government has identified that people with chronic neurological conditions, including M.E./CFS, are at increased risk of severe illness from Coronavirus.

More than one in four people with M.E./CFS are so severely affected that they are unable to leave their homes independently, and even those with the milder form of this non-visible illness struggle to access services and support.

Many of those we support have relied on the excellent home delivery service you offer for years, to get food and essential supplies. But over the past few weeks the increased demand has meant they are unable to compete with healthy people who are able to spend longer online, searching for slots and sourcing deliveries.

We are also hearing from those who are able to visit stores who have tried to use the dedicated shopping times for those at risk – but who have been challenged because the debilitating pain, fatigue and cognitive difficulties that come with this non-visible condition cannot be seen.

We are now seeing a huge increase in the number of calls to our already busy helplines, with many telling us they do not have any food in the house.
While those who are house/bed-bound are not necessarily included in the Government’s official category of “vulnerable,” this does not give the full picture.

This group of increasingly desperate people are unable to visit a store and many have no friends or family to support them. They need urgent help now – please will you:

• include those house/bed-bound by M.E./CFS in your priority access group for your online service?
• allow those with M.E./CFS, who are able to leave the house, access to priority shopping times in store?

We would be happy to provide our members with a resource they can download that shows they have a chronic neurological condition and are eligible to use this service.

Our teams are happy to help answer any questions or provide more information.

Carol Monaghan MP, Chair, APPG for M.E.

The Countess of Mar, Chair of Forward-ME

Ben Lake MP; Jim Shannon MP ; Mark Tami MP Dr James Davies MP; Edward Davey MP: Alex Sobel MP; Dame Diana Johnson MP.

Sonya Chowdhury, Chief Executive Action for M.E.

Nigel Riley, Chair, ME Association

Sue Waddle, Vice Chair, ME Research UK

Esperanza Moreno, #MEAction UK

Helen Winning, Chief Executive, The ME Trust

Simon Lawrence, Chair, The 25% ME Group

Jane Colby, Executive Director, Tymes Trust

Janice Kent, Director, reMEmber

Dr Nina Muirhead, Chair, Medical Education Group UK CFS/ME Research Collaborative

Dr William Weir

Dr Nigel Speight