You can read the Appropriate ME Treatment Debate transcription in Hansard, watch the full debate on YouTube, and see reports information below.

The #MEAction Network detailed report -
‘Historic Parliamentary Debate Shaped by People with ME’ highlighted that Stephen Pound MP made an especially rousing contribution to the proceedings, declaring that:
“This House recognises the reality of your condition. This House will not sit idly by while you suffer. This House will not ignore you. This House will devote its intelligence and its resources to research, ultimately to resolve and to cure, this terrible condition (…). ME sufferers the world over must know that this House and this nation is finally speaking for you.”

The #MEAction Network told us “Over 40 MPs from across the political divide sat in the House of Commons to debate a motion on myalgic encephalomyelitis (ME), with 27 making impassioned contributions on behalf of their constituents.” and gave us links to all MPs who spoke.

The ME Association’s (MEA) press release highlighted - ‘Parliamentary Debate: Kids being taken into care by medics who refuse to believe ME is real’. 
The MEA press release states - ‘MP Carol Monaghan, who brought today’s motion, led calls for more funding for research and better medical training to help support patients.’  MP Carol Monaghan said - “Leading up to this debate, I have been asked repeatedly what I hope to achieve. Ultimately what I want, and what the ME community wants, is better treatment and care for those with ME.” 
The MEA report includes ‘Comment on the Debate’ by Dr Charles Shepherd, Hon. Medical Adviser, M.E. Association; plus a list of MPs who were present.  Also it draws attention to child protection proceedings, suspension of controversial therapies, improving medical education, and research funding.

Action for ME (AfME) pointed out that they will be working with Forward ME to share the results of its survey for NICE on CBT and GET with MPs, once the report has been published. 

Please share your experiences.  See our blog earlier this month - NICE CBT and GET Patient Survey - Please complete by 31 January. 

ME Research UK (MERUK) gave a summary and commentary on ‘Commons Debate 24 January 2019’.  The MERUK report explained that “regrettably, pressure of time meant that MPs were asked to limit their speeches progressively from 4 to 3 and then to 2 minutes apiece and so much useful comment was probably left unsaid and the opportunity to make specific points lost. Nevertheless, 27 backbench MPs had the opportunity to contribute to this important debate.”

Prior to the debate, MERUK gave a ‘Background to House of Commons Debate’ article, explaining the research situation.  

M.E. Parliamentary Debate, in the House of Commons, Thursday, 24 January, 2.00pm. (Motion quoted further below.)

All Worcestershire MPs are encouraged to attend this important debate secured by Carol Monaghan MP.  Write to your MP. 

Robin Walker, MP for Worcester, said “I believe that research into this area is vital”, in a letter following the M.E. debate held in June 2018.

On 24 January, biomedical research will be amongst a number of major issues and concerns raised. 

These are referred to in the motion:
“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of M.E., supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of M.E. and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting M.E. families to unjustified child protection procedures.”

These issues and concerns are described in more detail in the briefing document that has been prepared and supported by national charities, who are members of the Forward ME group of charities.

The ME Association, and Action for ME give full information on this week’s debate. 

The June 2018 debate is available to watch on Youtube, and you can read the full Hansard transcript.

Here is the Hansard information following the debate -
Recognition of Fibromyalgia as a Disability and Fibromyalgia: Diagnosis.
 
Video of debate on parliamentlive.tv (available for download or as audio only).

And, here is the information available prior to the debate -
House of Commons Library: Recognition of fibromyalgia as a disability
"This pack has been prepared ahead of the debate to be held in Westminster Hall on Tuesday 15 January 2019 from 9.30-11am on recognition of fibromyalgia as a disability. The debate will be opened by Toby Perkins MP."

Download the full report Commons Library debate pack - Recognition of fibromyalgia as a disability (PDF, 257.88 KB)

Have you received or been offered Cognitive Behavioural Therapy (CBT) and/or Graded Exercise Therapy (GET) in the UK since 2007?

The Forward ME group of charities has launched a survey, having been asked by the National Institute of Health and Care Excellence (NICE) to gather evidence and experiences.

ME Research UK (MERUK) CEO, Simon Phillips, welcomed the launch of the survey, adding:
As one of the funders of the CBT and GET Patient Survey and as an active member of the Forward-ME Group, ME Research UK encourages all those who have undertaken or were offered CBT or GET in the UK since 2007 to take this opportunity to contribute before the end of January 2019. This will allow Forward-ME to submit the results to NICE for them to use as part of their review of the current Guideline. We will await the results of Oxford Brookes University’s analysis of the results with keen interest.

The ME Association (MEA) explain the deadline:
The deadline for completing the questionnaire is the 31st January 2019, to meet the very narrow time frame set out by NICE. 
Unfortunately, this also means that Forward ME do not have the time or capacity to send out/accept paper copies. We will make it very clear to NICE when we submit the report that those unable to complete the survey online, including many severely affected people, have not been able to take part.
The survey is however designed to allow a carer, parent or another person to fill it in on behalf of someone else if they are unable to do this themselves.

Join in discussions on social media groups.

Information from the Worcestershire NHS CFS/ME Local Multi-Disciplinary Team (LMDT): Nice guidelines (2007) suggest that the most effective treatments are Cognitive Behavioural Therapy (CBT) to help improve the way you feel about the condition, and Graded Exercise Therapy (GET) to gradually build up exercise tolerance and improve fatigue levels. The principles of these therapies underpin the treatment provided by the Worcestershire CFS/ME Service.

Dates and venues for 2019 have been added to the Meetings page.

All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us at whichever suits you.  Join us for a bite to eat, or just a cuppa and chat.

Please sign and forward petition:  “Stop harming ME/CFS patients - take CBT/GET out of NICE guidelines NOW”. 
Expected Publication date by NICE: 14 October 2020.
NICE has promised to review its current guidelines on ME/CFS, which is not scheduled to be completed until October 2020.  Meanwhile it has left the current guidelines in place, despite the recommendations for treatments that are known to be harmful.  

ME/CFS NICE Guideline updates from ME Association (MEA), Action for ME (AfME), Forward ME, and ME Research UK (MERUK).

MEA:  NICE ME/CFS Guideline Review: Publication of revised Scope, comments, and committee appointments | 16 October 2018.

AfME:  NICE publishes final scope for M.E./CFS guideline.
October 16, 2018.  The National Institute for Health and Care Excellence (NICE) has published its final scope for its updated guideline on M.E./CFS, along with consultation comments and committee appointments.

MEA:  Forward ME – Stakeholder deliberations over NICE Scope for ME/CFS | 22 October 2018.

AfME:  NICE guideline scope and committee: update & comment.
October 25, 2018.  
 
MERUK:  NICE ME/CFS Guideline Committee - ME Research UK’s Comment.
Posted on 29 Oct 2018.
ME Research UK joined other charities and those affected by ME/CFS in welcoming the long-awaited review of the NICE Guideline on ME/CFS.  Given the concerns expressed by many about the scope and content of the current Guideline, this review is vitally important and ME Research UK, as a stakeholder, has submitted its views to NICE during its consultation period.
We agree that it is important to listen and understand the views of a range of experts in order to ensure that the revised Guideline provides clarity for everyone who is affected by it - patients and clinicians - but the Guideline must be based on the best available research and the replacement Guideline written with objectivity.
ME Research UK wishes to express its disappointment with the current appointment of a comparatively small number of members of the ME/CFS Guideline Committee who have expertise on the biomedical basis of ME/CFS when compared to those whose background appears to favour the bio psychosocial model. Given the increasing evidence of a biomedical origin of the illness and the current uncertainty, for example, of the soundness of the PACE trial, this is to be regretted. 
We look forward to following the progress of the committee with interest and we hope that the views of those with biomedical expertise are heard and that the revised Guidelines will improve the situation for the many, many thousands of people affected by this illness.

ME Association Statement re: NICE ME/CFS Guideline Review and Committee Appointments | 09 November 2018. 
by Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
The ME Association has always been very clear on the position we take on the current (2007) NICE clinical guideline.
We believe that many of the key recommendations are unfit for purpose - especially those regarding the use of CBT and GET for everyone with mild or moderate ME/CFS.
We have played a key role in persuading NICE that a new guideline is required. The new guideline must recognise that ME/CFS is a serious multisystem disease and not a psychological illness.

Reports available to download, and presentations to watch on YouTube:
The ME Association (MEA) 24 page Summary Report available to download,  and the MEA article describing the 2 day research conference.
Action for ME (AfME) article -  with presentations to watch on AfME YouTube channel.
Statement from the members of the CureME Team who presented at the UK CFS/ME Research Collaborative Conference in Bristol.

The aim of the CFS/ME Research Collaborative (CMRC) is to promote the discovery of the biological mechanisms that underpin CFS/ME, which will drive the development of targeted treatments.   The MEA and AfME give background on the CFS/ME Research Collaborative.
 
Recent research announcements:
AfME’s latest research article.
MEA’s November Summary of ME/CFS Published Research.
Includes the 84 page ME Association Index of Published ME/CFS Research, available to download.
Completed research studies and reviews funded by ME Research UK, [reviews available from 2000 to 2018].

Do you have a Healthcare Plan?  Please respond on the ME Association Website Survey: 
The ME Association (MEA) explain why they are asking about healthcare plans.  This survey will help the MEA respond on behalf of pwME during the construction of the new NICE Guideline.

The MEA November website survey -  is half-way down on the home page of the MEA website. The MEA article includes Care Plan information from the current NICE Guideline NICE Guideline ME/CFS: General Principles of Care.
“The healthcare professional responsible for your care should make a care plan with you, which is looked at and kept up to date every time you see a healthcare professional about your CFS/ME.”

“It should include the symptoms and history of your condition, plans of treatments and self-help techniques you may be using, information and support needs, plans for work or education, and contact details of the healthcare professionals caring for you.”

“Your care should be given in ways that are suitable for you. This may mean having some tests or treatments at home or getting support and advice by telephone or email.”

How many times have you used the NHS (GP, clinic, hospital etc.) in the last 12 months because of your M.E.?
 
ME Association’s September website survey - 
The MEA ‘quick survey’ is half-way down on the home page of the MEA website  www.meassociation.org.uk . 

The MEA are asking people to contact them, as well as voting on the survey
“Whatever your reasons for using (or not using) the NHS, we’d really like to hear from you.

Please join what we hope will be a productive discussion on Facebook, and share your own experiences. You can also send them to us in an email (Title ‘The NHS and M.E.’).”

The MEA we want to talk about the NHS and the extent to which people with ME/CFS use the services that are currently available to them.
The MEA full article explains how the NHS can support people with M.E. - or see the pdf below.

Severe M.E. was featured on BBC Radio 5 live - in the Afternoon Edition programme. 
You can listen to the ME/CFS feature at - www.bbc.co.uk/programmes/b0bd75rp  - it begins at 2hrs 8mins into the broadcast.  It followed the 3pm news and continued until about 3.35pm.

Dr Charles Shepherd, the ME Association Hon. Medical Adviser, was interviewed by presenter Nihal Arthanayake, along with a former university student suffering from severe M.E.  The feature also included pre-recorded interviews from Gary Burgess and Merryn Crofts' sister Amy Williams, and feedback from listeners about their experiences.

Around one in four people with M.E. are severely affected by the condition. They are house or bed bound, unable to properly care for themselves or even wash properly, with some even reliant on tube feeding.  Many people with M.E are light and sound sensitive, with people with Severe M.E. often forced to live their lives in darkened rooms.

Severe M.E. articles from Action for ME and the ME Association

Action for M.E. highlight their awareness-raising film, My life is over: the pain of severe M.E., explaining what it's like to live with severe M.E.  Plus, Emily Collingridge’s book Severe M.E./CFS: a guide to living offers guidance on every aspect of living with severe M.E.

M.E. Association’ press release concentrates on two teenagers hit by devastating severe M.E. who reveal the brutal reality of life with the disease. 

The MEA detailed article gives links to

• Daily Mail 'Teenager is left battling chronic fatigue after a parasite burrowed into her EYE: 19-year-old claims the bug was in tap water which ended up on her contact lens and could now kill her'
  
• Daily Mirror 'Girl’s life ‘ripped to pieces’ after parasite found in tap water burrows into eye where it is now sleeping'