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The NICE website explains that individuals can comment on the Draft Guidance.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.

•  Action for ME  •  A.P.P.G  •  Coronavirus (COVID 19)  •  Forward ME  •  M.E. Association  •  MERUK  •  MP  •  N.I.C.E. •  Research  •  Worcestershire M.E. Social Group  •  Worcestershire M.E. Support Group 

• ME Association Guidance. 
This week the ME Association (MEA) launched a new leaflet, plus an update to add to the range that the MEA have been publishing since the very beginning of the coronavirus pandemic and national lockdown.  The MEA’s recent Covid-19 leaflets and letters are all available to download at the beginning of their latest update,

1. 12 page Covid-19 and ME/CFS Weekly Update - Coronavirus (COVID-19/Cv19) and ME/CFS leaflet
2. 4 page MEA information on reducing the risk of infection -  Reducing the risk of catching Coronavirus if you have ME/CFS leaflet by Dr Charles Shepherd.
3. 8 page MEA information on PVF / PVFS / ME / CFS following Covid-19 Infection - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
4. MEA statement, signed by Dr Charles Shepherd, in Letter: Asserting your vulnerable status.
5. 4 page detailed leaflet - Your Benefits during the Coronavirus Crisis. 

 
Further details of ME Association Guidance (1 to 5) below:

1. MEA leaflet - Coronavirus (COVID-19/Cv19) and ME/CFS
This week’s update, explains the Easing of Lockdown.
The various items of relaxation announced by the Prime Minister mean that changes in relation to exercise, education and employment are moving faster in England than elsewhere in the UK.
But none of these changes are going to have any significant affect on most people with ME/CFS - unless someone is planning to return to work or school.
As far as education in England is concerned, the key point here in relation to ME/CFS is that any return to school is not compulsory - the government has simply issued guidance on returning to school for certain groups of children.
My understanding is that nobody is going to be in trouble, or even fined, if they choose to continue to keep their children at home.
For people with ME/CFS who may now be asked to return to work, or choose to return to work, this has to be on the basis of people being able to travel to work safely. And all aspects of the workplace must be safe in relation to hygiene and social distancing measures.
Employers have a clear duty under Health and Safety legislation to provide a safe working environment.
The Health and Safety Executive has opened a hotline for people to call if they are not happy about what an employer is proposing or doing: 0300 790 6787, Monday to Friday 8.30am to 10.00pm.
If you have concerns about working arrangements you should discuss them with your trade union or professional body representative…
 
2. MEA leaflet - Reducing the risk of catching Coronavirus if you have ME/CFS by Dr Charles Shepherd 
The basis for this guidance -. People who are infected pass on the virus in tiny droplets that are spread from the mouth during coughing, spluttering and even breathing.
Viral droplets can also be passed on by people who are displaying no obvious symptoms. So, a friend, or neighbour, or caller at the door, who looks and feels well could still be infected and spreading the infection.
These virus laden particles then land on surfaces where they remain (for up to 72 hours on some hard surfaces) and can be picked up if someone touches the infected surface. An infected hand or finger then touches the eyes, mouth or nose and the virus enters the body.
 
This leaflet contains a10-point guide to the most important measures that will help to prevent you catching this infection.
1. Stay at Home
2. Social Distancing
3. Don’t touch surfaces outside the house
4. Don’t touch your face
5. Wash your hands regularly with soap and water
6. Post, parcels and shopping
7. Stay safe away from home
8. Take a vitamin D supplement
9. Face masks
10. Meeting a friend or relative
 
3. MEA leaflet - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
Our group’s recent blog Coronavirus (Covid-19): Post Covid-19 Rehabilitation  tells you about this MEA 8 page leaflet, and also gives information on a Daily Telegraph article, and Physios for ME.
 
4. MEA Letter: Asserting your vulnerable status
Go to our group’s update blog of 20 April for further information.    This update followed the Government announcement on 16 April -
".. .. the government has determined that current measures must remain in place for at least the next 3 weeks".
 
5. MEA leaflet - Your Benefits during the Coronavirus Crisis. 
The MEA Benefits leaflet has two sections - the first covering benefits for people tested positive for Covid-19 or have the symptoms or for those who share a household with someone in this situation;  followed by a section for people on Universal Credit or ESA who have been treated as having limited capability for work but not limited capability for work-related activity (ie “work preparation group” or “limited capability for work” respectively).
The information provided in this leaflet was correct at the time of writing - April 15 - but please be aware that the regulations and guidance are changing daily.
 
• Action for ME (AfME) have a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
AfME explain that it remains essential that people with M.E. follow existing advice about social distancing “to reduce social interaction between people in order to reduce the transmission of Coronavirus.” It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers. If you live in a residential care setting, other guidance is available. AfME advise - those who are at increased risk of severe illness from Coronavirus to be particularly stringent in following social distancing measures, pointing out that this means those who are: aged 70 or older, regardless of medical conditions, and those who are aged under 70 with a listed underlying health condition [...including] chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy diabetes.
Given that M.E. is listed as a neurological condition by NHS England, SNOMED (the system used by GPs in England for electronic health records) and the World Health Organisation, we include people with M.E. in this category of increased risk of severe illness from Coronavirus.
 
• ME Research UK are asking you to Chop for M.E. and raise funds for research.
With the UK government encouraging those who cannot work from home and whose workplace has appropriate measures in place to counter the COVID-19 threat to return to their workplaces, a novel issue has arisen - the urgent need for a haircut.
Likewise, for those of us at home - time may seem to have stood still but follicularly-speaking - it has not. It may be that a trim or even something more drastic is needed.
ME Research UK issues a challenge - Chop for ME - to raise funds for our charity. We hope that it can be shared widely and we hope that photos posted with #ChopforME will inspire others.  Get a home haircut, donate £10 by mobile phone, and challenge a friend.  Please remember to observe all social distancing and health guidelines pertaining to your location.

Become involved in Chop for M.E. 
Just Chop your Hair, and donate £10 to ME Research UK.  Text CHOPME to 70085 to donate £10;  Texts cost £10 plus one standard rate message;  Post a photo using the hashtag #ChopforME; and challenge your friends.
(This section amended on 27 May 2020)
 
• #MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME. 
 
• The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

 
Take care, and stay safe everyone.

• Worcestershire Awareness Week meeting cancelled due to Coronavirus (Covid-19). 
Our Group Lunches and Afternoon Café Meetings are being cancelled for the time being, due to Coronavirus (covid-19). 
This means that unfortunately our Awareness Week Afternoon Café Meeting planned for Thursday 14 May will not be happening.  Also, cancelled is our Group Lunch the following week on Tuesday 19th. 
 
Please watch our meetings page for confirmation when the lunches and afternoon café meetings will resume.
 
• Virtual #MillionsMissing on Tuesday, 12 May
Become involved - Check the #MillionsMissing website, facebook and twitter  for full information.
Join #MillionsMissing for a full day of programming beginning in the UK!  This event will stream on Facebook Live.  Check the schedule for the virtual calls, performances, and activities you can participate in.
 
On the first day of Awareness Month, the ME Association (MEA) gave us
 
• 'ME Awareness: What you need to know about M.E.' 
This article by Dr Charles Shepherd, Hon Medical Adviser of the MEA, included a 4 page leaflet -M.E. Factsheet available to download.  The leaflet provides information to help in the understanding of M.E, its symptoms, treatments and the current research situation.
 
Plus also, the MEA Press Release - Brits with devastating illness speak out about years lost in lockdown.
HUNDREDS of thousands of disabled Brits are no strangers to the isolation being forced on the population by coronavirus - and this month they are sharing their stories of years lost behind closed curtains.
Sufferers of the cruel, unrelenting disease M.E. are bravely speaking out as society also learns what it can feel like to be excluded.
Some 265,000 people in the UK have (myalgic encephalomyelitis - also sometimes called chronic fatigue syndrome), including children and teenagers.
 
More people share their experiences.  See the MEA website for more stories each day during Awareness Month - For ME Awareness Month in May, campaigning charity The ME Association is sharing the stories of real people whose lives have been effectively quarantined.
 
• Action for ME are asking for your stories
M.E. Awareness Month is almost upon us, with M.E. Awareness Day on Tuesday 12 May - and it's going to be an M.E. Awareness Month quite unlike any other.  While the world has changed in countless ways, daily life for many people with M.E. remains the same, being reluctant experts in self-isolation.   Whatever your experience, your story matters - and we want to help you bring it to the wider world this M.E. Awareness Month.
 
During ME Awareness Week, ME Research UK (MERUK)  normally encourages supporters to hold a fundraising and awareness raising Tea for ME event. Due shielding and social distancing requirement this will not be possible in May 2020.
Instead, (MERUK) wish to encourage supporters to have a ‘Tea with me’. It is not a fundraiser, merely an encouragement on 12th May (International ME Awareness Day) to reach out to those whom we know are affected by ME, their family and their carers and to have a virtual cuppa together - a brew for ME rather than turning blue for ME .
 
ME advocate and parliamentary champion, the Countess of Mar, retires from The House of Lords
 
Also, near the beginning of Awareness Month, the ME Association (MEA), Action for ME (AfME), ME Research UK (MERUK), announced that the Countess of Mar, retired from the House of Lords on 1st May.  The MEA, AfME and MERUK articles all give references to an article in the Telegraph.
 
• MERUK  - From 1st May 2020, when the Countess of Mar retires officially from the House of Lords after almost 45 years’ service, the ME community will be losing a champion of the first rank and a redoubtable campaigner for acceptance of the illness, for research and for the proper treatment from government and the NHS of those affected by ME.
MEA - The Countess of Mar has taken on many roles in both a personal and parliamentary capacity to help people with M.E.
Her chairmanship of the Forward-ME Group, her constant willingness to be involved with promoting biomedical research, improving medical education, asking parliamentary questions and securing the PACE trial debate, and helping with difficult individual cases.  Above all just being there to give sage advice when needed.  As Margaret said in her letter, she is still going to continue to be involved with the Forward ME Group.  So, we are not losing her completely and she will also continue as a Patron of the ME Association.
AfME  - Margaret, the 31st Countess of Mar, joined the House of Lords in 1975. She has been a staunch advocate for people with M.E., raising awareness and highlighting the lack of funding for biomedical research. In Parliamentary debates and through the use of written questions, Lady Mar has worked ceaselessly to push M.E. up the agenda, highlighting injustices faced by those living with the condition. She has undertaken much of this through her founding and chairing Forward-ME, the collaborative of UK charities and voluntary organisations of which Action for M.E. is a committed and active member.
 
• ME Awareness Day - The Birthday of Florence Nightingale
M.E. Awareness Week was established by patient advocates and is focused on May 12th, the birthday of Florence Nightingale, who was believed to have suffered with M.E.
 
Take care, and stay safe everyone.

• ME Association Full Guidance:  Coronavirus and ME/CFS by Dr Charles Shepherd
Dr Charles Shepherd, Hon. Medical Adviser of the ME Association (MEA), gives a new blog containing important new information and guidance that has emerged since the last main MEA update was published on Tuesday 24 March.  It features comprehensive and up to date details on all aspects of coronavirus and ME/CFS, and includes all the latest information and guidance from the UK Government.

This latest blog gives up-to-date information on -
1. Controlling the spread of the virus
2. Testing for the virus
3. What to do if you have symptoms suggestive of coronavirus infection
4. ME Association working arrangements
5. Employment
6. Shopping – Food and Medicines
7. Government Guidance: The vulnerable and extremely vulnerable
8. Research
9. The new NICE clinical guideline on ME/CFS 
10. Can pets catch and transmit the infection?
11. Possible forms of treatment  

The blog is followed by the main guidance section, containing -
A. The Coronavirus (Covid-19) – What it is, testing, treatment, vaccination etc.
B. What are the symptoms of the coronavirus infection?
C. What should you do if you have a new onset of cold or flu-like symptoms?
D. Who is most at risk of catching this infection?
E. Why people with ME/CFS should qualify as being vulnerable.
F. Why people with ME/CFS are not considered extremely vulnerable.
G. How can you prevent yourself from getting infected? Can pets transmit the infection?
H. What contact can you still have with other people? Social mobility, distancing, self-isolation and shielding.
I. What help is there for carers?
J. Education and Employment.
K. Shopping, food and medicine delivery.
L. Foreign Travel.
M. Hospital and other medical appointments.
 
• The 25% M.E. Group inform us of the useful medical information when treating COVID-19 in patients with underlying myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) and severe fibromyalgia (FM).   The two page leaflet available to download states that if your patient has been diagnosed with ME/CFS/severe FM, you should assume they have a serious, chronic, multisystem illness that may negatively impact their prognosis. The intention of this letter is to provide basic advice and medical/scientific information about ME/CFS/severe FM that can inform medical decisions.
 
• #MEAction continue to add information to their COVID-19 RESOURCES page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME.
 
• Action for ME (AfME) have a ‘Coronavirus and M.E./CFS’ page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
AfME’s Advice for people with M.E.

Other than on social distancing, no specific advice has been shared for people with M.E. If you are concerned, we urge you to seek professional medical advice.

Dr Nancy Klimas, Director at the Institute for Neuro Immune Medicine at Nova Southeastern University has shared a video, COVID-19 and M.E./CFS. Dr Klimas recommends following guidelines on hand washing and social distancing, and offers her thoughts on face masks, and taking supplements. She says that people with M.E. “probably are at a greater risk if you're exposed, because one of the underlying problems in M.E. is that the cells that protect you from viruses are less functional. Most of you have plenty of these cells, but they've been working so hard that they've depleted their resources and they're not able to do as much if they come across a virus.”
 
• Coronavirus (Covid-19): Letter to Supermarkets & MPs
Initially shown on the ME Research UK website, followed by articles from The ME Association, the 25% ME Group, and Action for ME who all write about the need for priority shopping for people with ME/CFS.
 
• The ME Association told us about a Listening Books offer.
Listening Books, that great online institution who have Stephen Fry as their patron, have come up with a special offer to help people while away the hours while they are in lockdown.

For those who really can’t afford the £20 a year to borrow up to 10 audiobooks a week, they’re offering completely free membership instead.  And, unlike some state benefits, there’s no means test – just a requirement from you to pop a note into their honesty box which says you can’t afford the fee.
 
• The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.

• Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
• Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
  Coronavirus and members of the 25% ME Group

 
Take care, and stay safe everyone.

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
 

International M.E./CFS & FMS Awareness Day. 
In a recent letter, Robin Walker Worcester MP, tells us -
“I welcome ME Awareness Week, and I hope it helps more people understand this condition, which can be so frustrating and distressing for many.”

May 12 - #MillionsMissing Global Virtual Meetup
#MillionsMissing is a global campaign for ME health equality.  No matter where in the world you are, throughout the day on May 12th, you will be able to call into a "virtual room" where you can connect with other activists.

Events in Worcestershire and nearby during May:
• Wednesday 8 May,
ME/CFS NHS Service M.E. Awareness Week Drop-In
anytime between 1.00 and 3.00 pm,  at the Lyppard Hub (Ankerage Green, Worcester, WR4 0DZ)
• Thursday 9 May,
Worcestershire M.E. Social Group Afternoon Café Meeting -
from 2.30 pm to 4.00 pm, at the Olive Grove Café, David's Garden Centre by Cherry Lane, Ash Lane, Worcester, WR3 8TB
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome.  Join us for a bite to eat, or just a cuppa and chat.
• Friday 10 May  
from 12 noon - 3pm, at St Philip's Cathedral Square, Birmingham, B3 2QB
People from Worcestershire are welcome at the Solihull & South Birmingham ME Support Group’s third #MILLIONS MISSING BIRMINGHAM.  Full information from Solihull & South Birmingham ME Support Group and MEACTION.
• Tuesday 14 May
Walsall Fibro & M.E. Link Awareness Evening.  From 7.00 - 9.00 pm.
• Tuesday 21 May
Worcestershire M.E. Social Group Lunch
from 12.30 pm to 2.00 pm, at The Mayfly Restaurant, Cob House Fisheries, Worcester Road, Wichenford, Worcester, WR6 6YE
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome.  Join us for a bite to eat, or just a cuppa and chat. 
• Wednesday 29 May
Worcestershire NHS Chronic Fatigue Syndrome/M.E. Service Recovery And Management (RAM) Group.

The ME Association ask -  How will you Go Blue 4 M.E.?, and, explain  ME is REAL! Why ME Awareness Week matters more than ever…

M.E. Research UK tell us about ‘Walk for ME 2019’
The aim of Walk for ME is to get as many people as possible, especially the family and friends of those affected by ME, to do a sponsored walk, run, swim or ride of whatever length they feel comfortable with.  There is no minimum distance, no targets and, although it runs principally through ME Awareness Week (6th to 12th May 2019), no set dates. 

This year, 2019, marks the 27th anniversary of International May 12th Awareness Day.  The International Awareness Day for the spectrum of illnesses called Chronic Immunological and Neurological Diseases (CIND).

ME Awareness Day - The Birthday of Florence Nightingale
M.E. Awareness Week was established by patient advocates and is focused on May 12th, the birthday of Florence Nightingale, who was believed to have suffered with M.E.

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.  

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.

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.

NICE news article - NICE announces next steps in updating its guideline on ME/CFS.

A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
 
NICE Guideline - ME/CFS : Diagnosis and Management
A New Guideline is in development, with expected publication date: 14 October 2020.  This Guideline will fully update (CG53)

 
Forward-ME members discussed the NICE Guideline when they met on 10 January, a week before the NICE Guideline Stakeholder Engagement workshop.   Forward-ME is a collaboration of ME/CFS charities - chaired by the Countess of Mar.

 
Reports following the workshop:

• Dr Charles Shepherd, the ME Association’s Medical Adviser summarised the key points;  and the MEA announced the NICE News item - 
• Sue Waddle, Vice Chair of ME Research UK (MERUK) attended the workshop and gave her comments in the MERUK NICE Guideline Report
• Action for M.E.’s report on their involvement at the NICE guideline meeting, and further report -

 
 
Information from the Worcestershire NHS CFS/ME Service website:
Worcestershire Health & Care NHS Trust Extract from ‘Family & Friends Area’ -
Treatments for CFS/ME
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.