Kidderminster Shuttle: Dr Richard Taylor: Former Wyre Forest MP dies aged 89.
 
The Gibson Inquiry (2006)
The Gibson Inquiry - Dr Richard Taylor, MP for Wyre Forest, (from 2001 to 2010), was Vice chairman of this all-party Group for Scientific Research into ME (GRSME). 
Our group were invited to the Oral Hearing on 18 April, 2006. Our presentation document is on the GSRME website.  The Report was published in November 2006.

Dr Taylor is on page 11 of the Spring 2007 ME Research UK magazine - 'Breakthrough'. 
“In September 2006, Simon Winnall and Ian Winstanley embarked on a great expedition to North-East Tanzania to climb Mount Kilimanjaro, the highest peak in Africa at 5,895 m.  Simon and Ian funded the trip themselves, so all the money raised went towards our ME research programme..
Simon and Ian presented the cheque to Dr Richard Taylor, MP for Wyre Forest and Vice Chair of the Parliamentary Inquiry on Scientific Research into ME, who accepted it on our behalf at the Worcestershire ME Support Group.” 

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Warwick Davis passed away peacefully on Monday 5 July.  Warwick will be sadly missed by his family and his many friends.

Warwick’s funeral will be held on Monday August 9th at 11.00 am, at Stourbridge Crematorium, South Road, Stourbridge, West Midlands, DY8 3RQ.

Due to the Covid situation the Funeral Director needs a list of all those attending, but we understand that people not on the list who do turn up will be allowed to attend.  If you are hoping to attend, please contact the Worcestershire ME Social Group by email or phone so we can pass on your name, address and telephone number, please.

Many of Warwick’s friends will have heard him talk about ME/CFS Research, and that he wanted his body to be used for research into ME/CFS.  You will be pleased to hear that his wishes have been carried out.  Our Group heard from Dr Charles Shepherd, the ME Association’s Hon. Medical Adviser, who was in contact with Sue Wildblood, one of Warwick’s cousins.

Earlier this year Warwick talked about his wish to see his sister Carol and her family in Australia to celebrate his 75th birthday, but with the COVID situation sadly that couldn’t happen.

Flowers, or donations to Macmillan Cancer Support, can be sent to the funeral directors, Vernon Kendrick, Greenfield House, 11 Greenfield Avenue, Stourbridge, West Midlands, DY8 1ST.

Warwick was the Worcestershire ME Support Group’s Vice Chairman and Area Contact for Hagley, and helped with the organisation of the group’s meetings in Kidderminster.  Many people will also have met him when he organised the Social Group’s Lunches across the county for many years.

Last year, Warwick wrote to the ME Association (MEA), giving details of his involvement with a ‘Case study for long term illness’ at his local surgery.  The letter was published on page 55, of the Winter 2020 edition of the MEA’s ‘ME Essential’ magazine, and is included below following the kind permission received from Caroline Cavey, the ME Essential Editor.

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Sad news from the Worcestershire ME Social Group - Warwick Davis passed away peacefully on Monday 5 July, losing his life to cancer.

Warwick was the Worcestershire ME Support Group’s Vice Chairman, and helped with the organisation of the group’s meetings in Kidderminster.  Many people will then have met him when he organised the Social Group’s Lunches across the county for many years.  He would turn up to the lunches and be there whether there was one or many people joining him.

For many years Warwick was invited to attend his local GP Surgery and give talks about M.E. to medical students as part of their training.

He will be sadly missed by many.

Warwick can be seen at the afternoon café meeting during the ME Awareness Week in May 2018, and together with his much loved dog Clyde in 2011, collecting for ME Research UK.

Blog post May 2018: Worcestershire CFS/ME service - Twitter Takeover
Marina (Team Lead/ Specialist Occupational Therapist) and George (Honorary Assistant Psychologist) dropped in on the social group at the afternoon cafe meeting today.

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At the APPG on ME (All Parliamentary Group on ME) next week, MPs will be discussing diagnosis and management and the new draft of the NICE (National Institute for Health & Care Excellence) Guideline on ME/CFS CFS. 
 
The NICE Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline is in development, with an expected publication date of 21 April 2021.
The NICE website explains that individuals can comment on the Draft Guidance.  See their website, as this must be done via their comments form, and you need to be a registered stakeholder.  Or, contact the stakeholder organisation that most closely represents your interests and pass your comments to them.  The consultation closes on 22 December 2020 at 5pm. 
 
Become involved in the response to the Draft of the NICE Guideline via national M.E. Charities.  The Worcestershire M.E. Support Group closed at the end of 2016, and the Social Group does not have membership so we are now unable to contact people with a diagnosis of M.E. in Worcestershire.  To give you an idea of the local situation, in 2003/2004 the Worcestershire ME Support Group received members’ helpful and unhelpful responses.  The information is taken from completed membership questionnaires in the year ending August 2004.

Members' helpful and unhelpful responses (pdf).

Recent articles following the publication of the Draft of the NICE Guideline -
 
The ME Association (MEA) gave their NICE Press Statement & Media Coverage of New Clinical Guideline on ME/CFS, including links to media articles, and the MEA’s Initial Reaction -
 “We are very pleased to find that NICE has addressed many of the defects in the current guideline on ME/CFS.
“In particular, we welcome the decision to no longer recommend graded exercise therapy (GET) as a treatment for ME/CFS and the decision to give heightened recognition to the many problems faced by people with severe ME/CFS.
“We do, however, have concerns about some of the diagnostic recommendations.  And there is a need to provide far more information on symptom management that is specific to ME/CFS.
“As NICE is now preparing a rapid guideline on Long COVID, a post viral syndrome that has a number of symptoms that overlap with ME/CFS, we hope that the new ME/CFS guidance on activity and energy management will also be used to help people with Long COVID.
“We will be consulting with our members on the draft and sending in a detailed stakeholder response to NICE in December.”
 
The MEA asked: What do you think about the new NICE Clinical Guideline on ME/CFS?
The MEA explained that the draft of the new NICE clinical guideline on ME/CFS is now available to read as part of the stakeholder consultation, and gave details on how to take part.
Please take your time to read the draft clinical guideline and then pass on your comments - preferably in very short statements with a reference to which part of the guideline you are commenting on.  You can do so by: 

• Completing the MEA Monthly Poll located to the right of the MEA website: What is your overall opinion of the draft NICE guideline on ME/CFS?
• Taking part in the discussions about the draft guideline on MEA Facebook,
• Contacting us by email at: feedback@meassociation.org.uk

 
Action for ME (AfME) announced - Draft NICE guideline for M.E.: have your say.
The National Institute for Health and Care Excellence (NICE) has published its draft guidance on the diagnosis, treatment and management of M.E./CFS.  Updated guidance has been long-awaited by people with M.E., advocates and charities, including Action for M.E., who have campaigned hard for much-needed changes.
We are reviewing the guideline in detail, as a priority. We are hugely encouraged to note the following, so far:

• "Do not offer people with ME/CFS any therapy based on physical activity or exercise as a treatment or cure for ME/CFS [or] any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy.”
• "Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS."
• "Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness."

It is essential that the views of people with M.E. continue to shape this consultation and that the final guideline has a patient-led approach to diagnosis and management.  To make sure this happens, we will be:

• Publishing, as soon as possible, short summaries of key chapters so those less able to read long documents have a clear overview of what the draft guideline says
• sharing a survey to gather views on the guidance; we will link to this ASAP on our website and social media, and in InterAction, our membership magazine, for those not online
• using your views, along with data from our Big Survey last year, to inform our response to NICE, by their deadline of Tuesday 22 December.

Huge thanks to those who have contributed to the draft guideline, particularly people with M.E. Please do check back for updates - we will be posting our summaries and survey on our NICE guideline page as they become available.
 
Invest in ME Research issued a press release on 'NICE Draft Updated Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS)'. Invest in ME Research stated that until the charity is able to examine the full draft guidelines document their comments relate only to the NICE press release.
 
ME Research UK (MERUK), gave a NICE Guideline Update - Press Release.
MERUK explained that the NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS
NICE has today (10 November 2020) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
It covers the identification and assessment of ME/CFS before and after diagnosis, its management, monitoring and review, information, education, and support for people with suspected or diagnosed ME/CFS and their families and carers, as well as information, education and support for health and social care professionals.
 
Last month, on 8 October, the MEA gave a Statement on the NICE clinical guideline for ME/CFS and the NICE guideline for Post/Long Covid-19.
This detailed article included sections on - Explanation of Post/Long Covid-19 and ME/CFS; NICE Clinical Guidelines on ME/CFS and Post/Long Covid-19; and Illness Management
 
Earlier, in August - ME Research UK’s article - Forward-ME call to NICE. 
Building upon previous submissions to NICE in connection with NICE’s on-going ME/CFS Guideline review which included the ME Research UK and ME Association-funded patient survey on the efficacy and effects of Graded Exercise Therapy and Cognitive Behavioural Therapy, the Forward-ME Group  have contacted NICE as follows:
As charities supporting people with M.E. we have been actively campaigning for NICE to remove the recommendation of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) in the guideline for M.E./CFS.
Patient surveys conducted by charities and groups including Forward-ME have repeatedly shown the harm that can be caused by these therapies, even when delivered by an M.E. Specialist. While this guideline is under review we are calling for NICE to remove the recommendation and add a health warning stating the risks associated with GET and CBT.
One of the main considerations during the guideline review is the evidence for GET in particular. It is therefore appropriate that they take this action in response to the legitimate questions and concerns that have been raised over its safety and effectiveness.
 
For future updates:  see - UK National ME/CFS/Fibromyalgia Organisations., and M.E. Research Organisations.
 
 
Take care, and stay safe everyone.

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The Worcestershire ME Support Group’s "Symptoms of M.E./CFS" gives symptoms taken from ‘Living with M.E.’ by Dr Charles Shepherd, ‘M.E. - How to Live with It’ by Dr Anne MacIntyre, and ‘The Disease of a Thousand Names’ by Dr David Bell.  The percentages shown represent M.E. patients displaying that particular symptom.  Many people with a diagnosis of ME, and/or ME/CFS, find this helpful when explaining their symptoms to their doctor.

Worcestershire ME Support Group members' helpful and unhelpful responses.
The Worcestershire ME Support Group received members’ helpful and unhelpful responses back in 2003/2004. 

This information may still be helpful for people trying to understand ME/CFS, and how some people can be helped.  The information is taken from completed membership questionnaires in the year ending August 2004.

There is a Group Disclaimer on the last page -
"Views and opinions expressed in this document are the personal beliefs of the individual contributor.  They may not represent the feelings of all members, and are not necessarily those of the Worcestershire M.E. Support Group.

The committee and Worcestershire M.E. Support Group do not endorse or recommend any particular treatment, therapy or practitioner.  Practitioners and treatments mentioned are for information only.  Any treatment, tests or remedies mentioned may be tried at your own risk, but preferably after consultation with your GP."

The Group on Scientific Research into Myalgic Encephalomyelitis (GRSME) - Chaired by Dr Ian Gibson MP for Norwich North from 1997 to 2009, and Vice Chair, Dr Richard Taylor, MP for Wyre Forest from 2001 to 2010.

In 2006 the Worcestershire ME Support Group’s Presentation at the Gibson Enquiry included a reference to the members’ helpful and unhelpful responses.

"A couple of years ago our Group asked what members found helpful and what had been unhelpful.  The replies showed how much money and time is used going from one complementary therapy to another trying to find something that will relieve some of their many symptoms.  They also try various supplements without knowing which would be of benefit to them.  All this is costing people hundreds of pounds, and yet the majority are living on a very reduced income, or benefits."
 
Full presentation - http://www.erythos.com/gibsonenquiry/PresDocs.html

Ian Logan, has written a final letter as Chair of the Worcestershire ME Support Group.  The Final Financial Report and Statement of Accounts following closure of the Worcestershire ME Support Group have been produced.

All people affected by M.E. (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), PVFS (Post Viral Fatigue Syndrome), and FMS (Fibromyalgia Syndrome), are welcomed at all social gatherings.  Please see meetings page for dates and venues.

Action for ME’s ‘Christmas 2016’ InterAction magazine throws a spotlight on our group.

Worcestershire ME group faces imminent closure
http://redditchstandard.co.uk/news/worcestershire-group-faces-imminent-closure/
 
Worcestershire ME support group faces closure
http://www.herefordtimes.com/news/regional/worcestershire/14741876.Worcestershire_ME_support_group_faces_closure/?ref=rss

Bromsgrove Standard –
 
Urgent appeal to find volunteers for Worcestershire ME Support Group which is facing closure
http://bromsgrovestandard.co.uk/news/urgent-appeal-find-volunteers-worcestershire-support-group-facing-closure/
 
Droitwich Standard –
 
Urgent appeal – Worcestershire ME Support Group is facing closure unless volunteers come forward to help
http://droitwichstandard.co.uk/news/urgent-appeal-worcestershire-support-group-facing-closure-unless-volunteers-come-forward-help/
 
Redditch Advertiser –
 
Meeting to discuss future of Worcestershire ME support group
www.redditchadvertiser.co.uk/news/regional/14739525.Worcestershire_ME_support_group_faces_closure/