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World ME Day & ME Awareness Week (12 May, and 8 to 14 May)

8/5/2023

 
World ME Day  - The disease where pushing harder can make you sicker.
On May 12th each year, World ME Alliance focuses on learning about, raising awareness of, and campaigning around Myalgic Encephalomyeltitis.
 
World ME Alliance - (We are a unique alliance of ME organisations from around the world.  Our membership is made up of senior leads/representatives from national ME organisations, working together to achieve change for people with ME at a national and international level.) 
For 2023 World ME Alliance are focusing on the key aspect of ME that everyone should know about: that pushing harder can make you sicker.  The technical term for this is post-exertional malaise (PEM).
Post-exertional malaise (PEM) is something that everyone with ME experiences. 
It is a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness and is the hallmark symptom of ME. For some patients, sensory overload (light and sound) can induce PEM. PEM intensifies the severity of symptoms and may last days, weeks, or permanently.  The symptoms typically begin to worsen 12 to 48 hours after the activity or exposure.
 
The World ME Alliance website gives news from around the world, and suggestions as to how you can be involved.
 
 
ME Research UK publicise - Walk for ME 2023 - 
 
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 (2nd week in May), no set dates. You choose when you wish to walk, the distance, the location and the charity to support.  No matter what you do step-by-step, you will be supporting a great cause and also raising awareness with every stride.
 
It is hoped that as many friends and loved ones as possible will do a sponsored walk or other sponsored event during ME Awareness Week, although you can also do a walk, run, swim or ride at any other time if you prefer.
“The whole idea is that the friend or family member is doing something that their loved one would love to be able to do but can’t.“
Further information on the Walk for ME Just Giving page.
 
 
#MillionsMissing 2023! Announce -
#MillionsMissing 2023 will be held on May 12, 2023, at the Washington Monument in Washington, DC.  The event will feature an art installation and a press conference. 
#MEAction will host #MillionsMissing 2023 in partnership with Body Politic to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated complex chronic diseases.
The pandemic showed the public what people with ME already knew: that the government, our healthcare systems, and society at large have systematically deprioritized people with infection-associated chronic illnesses.
The #MillionsMissing 2023 website explains how you can see the press conference, and become involved.
 
 
Action for M.E. (AfME) announce -
Blue Sunday;  The Tea Party for M.E.; 14th May 2023.
 
Champion fundraiser Anna Redshaw’s Blue Sunday Tea Party is celebrating its 10th anniversary in 2023 and has so far raised over £70,000 for M.E. charities across the world. Join Anna and Action for M.E. this May to raise vital funds for people living with M.E., whilst enjoying tea, cake and community.
Anna has been running the Blue Sunday Tea Party for M.E. since 2013, as a way to fundraise but also to break the isolation so often experienced by people with M.E. You can read more about how the Blue Sunday Tea Party started on Anna’s blog.
Full information on How To Take Part available from AfME 
 
 
The ME Association (MEA) announcement -
ME Awareness Week - pleasant surprises from the Gloucestershire Friendship Group -
 
If paradise could be twice as nice, you’ll never find a better bunch than the Gloucestershire ME/CFS Friendship Group. They’ll be holding their annual ME Awareness Week bash on Saturday, 13th May and this year they’ve got a couple of surprises up their sleeves.
That afternoon, members will be out in force in Quedgeley Community Centre, near Gloucester, for a natter, a cuppa, a slice or two of some good home-bakes and a raffle stocked with over 20 prizes. The event will be held between 1.30 and 3.30pm.
 
 
Watch out for further announcements during week, plus a reminder -
Please join us during M.E. Awareness Week, when we look forward to greeting Marina Townend, Specialist Occupational Therapist/Team Lead, of the Worcestershire & Herefordshire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services.
 
Our Afternoon Café Meeting will be held on Wednesday, 10 May, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  Join us 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, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us whenever it suits you.
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
Marina Townend, recently updated us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services.  This is given in our recent Worcestershire NHS ME/CFS Local Services News blogs in April and March .
 
 
BACME (The British Association of Clinicians in ME/CFS) which is a multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS, also explains -
Herefordshire and Worcestershire ME/CFS Service
The service supports people with a confirmed diagnosis of ME/CFS, age 18 and over, who have a GP based in Herefordshire or Worcestershire.  It offers therapeutic intervention by Occupational Therapists and Psychologists on a 1:1 and group basis, much of which is provided virtually (video or telephone call), although clinic appointments are available if preferred.  We can also undertake home visits if clinically indicated.


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APPG on ME meeting, Wednesday 10 May

13/4/2023

 
Invite your MP to join the next meeting of the All Party Parliamentary Group on ME.  Explain your experiences to your MP, especially since the new NICE guideline was published in October 2021.
 
The meeting previously planned to be held in March, was postponed. 
 
The ME Association (MEA) now state  -
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Wednesday 10 May 2023 at 2pm.  In addition to reconstituting the APPG, the AGM will include:
  • a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
  • a discussion of support for those with severe ME
  • consideration of our workplan for the coming year.
  • Minutes of the AGM will be shared in accordance with APPG rules.
 
We'd be really grateful if you could invite your MP to attend.  Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).
Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG. 
 
A template letter for your use, is also available on the MEA website.
 
 
At the end of April 2022 our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
 
The new Myalgic Encephalomyelitis (or Encephalopathy)/ Chronic Fatigue Syndrome: Diagnosis and Management. NICE guideline [NG206] was published in October 2021. 
See from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021

•  Action for ME  •  A.P.P.G 
• 
M.E. Association  •  MP 

• 
N.I.C.E. 
•  Parliament U.K. 

APPG on ME meeting, Tuesday 21 March

11/3/2023

 
Invite your MP to join the next meeting of the All Party Parliamentary Group on ME.  Explain your experiences to your MP, especially since the new NICE guideline was published in October 2021.
 
The ME Association (MEA) give details -
Invite your MP to join the next meeting of the All-Party Parliamentary on M.E
March 8, 2023
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 21 March 2023 from 3:30pm-4:30pm. In addition to reconstituting the APPG, the AGM will include:

  • a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
  • a discussion of support for those with severe ME
  • consideration of our workplan for the coming year.
  • Minutes of the AGM will be shared in accordance with APPG rules.
 
We'd be really grateful if you could invite your MP to attend.  Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.). 
Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG. 
 
Template email included by the MEA., for your use.
 
 
At the end of April 2022 our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
Plus recent local news:
Worcestershire NHS ME/CFS Local Services News
 
The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.
 
Plus, we’ve received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Worcestershire NHS ME/CFS Local Services, and responding to our queries.
 
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021. 
See from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021


•  Action for ME •  A.P.P.G •  Hereford •  Local News 
•  M.E. Association •  MP •  N.H.S. •  N.I.C.E. 
•  Parliament U.K. •  Worcestershire

Worcestershire NHS ME/CFS Local Services News

9/3/2023

 
 The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.      
 
This week, we’ve received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Worcestershire NHS ME/CFS Local Services, and responding to our queries.
 
Diagnosing ME/CFS,
Marina informs us -
Unfortunately, we are still unable to confirm a diagnosis of ME/CFS within this service, despite our continued efforts to resolve this situation.  Last year, a service level agreement was made with Birmingham and Solihull Trust whereby the Consultant in their ME/CFS service would assess 50 people within Herefordshire and Worcestershire who have a suspected diagnosis of ME/CFS. Once a diagnosis has been confirmed, we then provide a service to those patients.  This temporary arrangement has worked well but there isn't capacity to continue so we need to find another solution. 
We have been working closely with our commissioner to identify various options, and these are being discussed with GP's and at executive level within the Trust and ICB. I hope a model will be agreed soon and look forward to local people being able to receive a diagnosis (and therefore support and treatment) in a timely way.
In the meantime, GPs continue to refer to this service.  We advise about other options for diagnosis (as detailed on your website) and hold a list of the patients who are in this position.  We have also told people about the (paying) Healthcare service that Action for ME offer, but appreciate this is not an option for everyone. 
 
Action for ME’s "Healthcare Services for M.E." (mentioned by Marina above).
Following our merger with The ME Trust in February 2022, we are now able to offer Healthcare Services alongside our Information and Support, Family Support and Advocacy services.
Click on the menu for more information about each clinical service, including how to refer yourself and details of fees.
Action for ME give details of bursary support on their website.


Covid-19,
Marina informs us -
Since October 2021, the Post Covid Syndrome (PCS) service sits under the umbrella of the ME/CFS service.  Sara Young (OT) has been seconded to the Clinical Lead post, and Helen Ayres (Psychologist) and I both work additional hours to staff the PCS service.  Demand has been very high, and it has been difficult to recruit to the service due to the way that the government provides funding on an annual basis at present. 
 
The Current Worcestershire NHS ME/CFS Specialist Services, -
Marina informed us -
We have recently welcomed Ceri Howell, Therapy Assistant, to the team and she works full-time hours across both services. Mya Krishnan, Clinical Psychologist, also started with us last May, working 2 days/week. 
I am currently covering all the Occupational Therapy input in the ME/CFS service. Unfortunately, the team has been without full admin support for the past 14 months, which has been difficult but will hopefully improve soon.
We continue to offer 1:1 and group interventions, mainly (but not exclusively) on-line as the feedback we have received suggests that this is generally helpful to manage fatigue.  We are starting to get more referrals from Herefordshire GP's now, and still receive a steady stream of referrals for people with the condition who live in Worcestershire.
 
Marina also apologised for the time it has taken her to get back to us.  She explained - - it has been an even busier couple of months as I have had two 3rd year students (OT and Physiotherapy) with me and the team, and new staff members to induct.  All very positive but also time consuming...!
We are still making edits to our website, and any feedback is welcome as we are keen to improve it further, within the corporate constraints of design. I am aware there are various typos and some links that need updating, and I am still liaising with our Comms team about these so hopefully the website will be amended soon. 
I was very sad to hear about Warwick but I'm pleased that you have resumed your meet-ups, and hope to come along to one of these in the next couple of months.  It has been a challenging time for many over the past few years, and support from us all is valued and much needed.
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.
 
See also from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021
 
 
Worcester Afternoon Café Meetings
 
Our next Afternoon Café Meeting will be from 2.00 - 3.30 pm, on Wednesday 12 April, 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.)  
 
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
•  Action for ME  •  Coronavirus (COVID 19)  •  Hereford 
•  Local News  •  Meetings  •  N.H.S.  •  N.I.C.E.  •  Post COVID Syndrome (Long COVID)   •  Worcestershire  •  Worcestershire M.E. Social Group  

Resignation of Sajid Javid as Secretary of State for Health and Social Care

7/7/2022

 
Action for ME (AfME) and the ME Association (MEA) give their immediate reactions. 
 
AfME reaction includes thoughts trom Sonya Chowdhury, AfME Chief Executive -
 
The resignation of Sajid Javid as Secretary of State -
July 06, 2022
Last night news broke that the Secretary of State for Health and Social Care Sajid Javid had resigned from his role. This has left people with M.E. feeling concerned because Mr Javid had initiated the development of a much-needed delivery plan for M.E.
 
Our Chief Executive Sonya Chowdhury who is working collaboratively with the Government shared her thoughts:  “I'm pleased to continue working with such a dedicated & personally committed team of civil servants across the Department of Health and Social Care and other organisations to drive work forward with the M.E. delivery plan and continue to make a real difference for all our community.”
 
Since the release of the written ministerial statement in May meetings have been held covering patient experience, education, training and research into cause and treatment of M.E./CFS including a roundtable that Sonya attended at the end of June.
We would like to welcome the new Secretary of State for Health and Social Care Steve Barclay and look forward to continuing this vital work alongside him at the other members of the Department.
 
 
MEA reaction includes thoughts trom Dr Charles Shepherd, Hon. MEA Medical Adviser
Sajid Javid, Secretary of State for Health and Social Care, resigns and is replaced by Stephen Barclay
July 6, 2022
 
The resignation of Sajid Javid, Secretary of State for Health and Social Security, is clearly bad news given his genuine concern and commitment to improve the care of people with ME/CFS and research into the cause and treatment of ME/CFS
 
Fortunately, the three ministerial groups covering patient experience, education and training, and research into cause and treatment of ME/CFS have all been set up and had their first meetings.  I attended the first meeting of the research group last week.
So I assume that these initiatives will all continue as planned under the new Secretary of State - the Rt Hon Stephen Barclay MP.
Dr Charles Shepherd, Hon. Medical Adviser ME Association
 
 
For further information, see our recent blog - Sajid Javid ‘Rethinking ME’ after young relative’s battles  including -  Rethinking ME – report launch
 
At the end of April our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, inform your MP of your situation.
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.
 

•  Action for ME  •  Government U.K.  •  Local News 
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"Rethinking ME" at APPG on ME meeting, Wednesday 25 May

19/5/2022

 
Remind your MP to attend the launch of "Rethinking ME" with Sajid Javid, MP for Bromsgrove, and Health and Social Care Secretary.
 
Action for ME (AfME) announced -
APPG on M.E. to launch new report, Rethinking M.E.
May 13, 2022
The All-Party Parliamentary Group (APPG) on M.E. have announced a meeting on Wednesday 25 May to launch their first report, Rethinking M.E.  Carol Monaghan MP, Chair of the APPG, says: 
"At this event, we will reflect on the progress being made to improve recognition and understanding of M.E. amongst the medical profession and other relevant professions. We will also hear directly from people M.E. on their desire for better care and support."
All Westminster MPs (and some members of the House of Lords) have been invited by Carol Monaghan MP to come to this meeting, and people with M.E. are welcome to encourage their MP to attend.
 
 
At the end of April our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, this is your opportunity to let your MP know?
 
 
Announcements from the MEA (ME Association) -
 
All-Party Parliamentary Group on ME to launch report: 'Rethinking ME'
May 13, 2022
 
ME Awareness Day Early Day Motion from Carol Monaghan, MP
May 13, 2022
 
Remind your MP to attend the launch of "Rethinking ME"
May 17, 2022
The APPG Report “Rethinking ME” will be launched at an auspicious event at the House of Commons on May 25th. It will cover key issues of concern - research, management, NHS services, benefits, children, severe ME/CFS etc. - and will make a number of recommendations concerning action that needs to be taken to improve the lives of people with this condition.
 “At this reception, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people ME on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.”
Carol Monaghan, MP, Chair of the APPG on ME.
 
Invitations have already been sent to all MPs and members of the House of Lords, but you can also remind your MP about the importance of this event, by sending an email using the template below (which can be suitably amended or added to if you wish to do so).
You may want to add a short note relating to a personal, local, or national issue of concern. This might include a diagnostic delay, a DWP benefits problem, issues faced by children, or by people severely or very severely affected, lack of a local ME/CFS specialist service, or the need for biomedical research - all of which are covered in the APPG Report.
 
 
All-Party Parliamentary Group on ME launch official website
May 18, 2022
The All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) has today launched its official website.  The APPG is a cross-party voice in Westminster building change for people with ME with Carol Monaghan MP serving as Chair.
Secretariat - The secretariat for the APPG on ME is jointly undertaken by Action for M.E. and The ME Association
 
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.

•  Action for ME  •  A.P.P.G  •  Government U.K.   •  M.E. Association 
•  MP 
•  N.H.S.  •  Parliament U.K.  •  Worcestershire M.E. Social Group

World M.E. Day Statements

18/5/2022

 
(Including - Health and Social Care Secretary, and MP for Bromsgrove, Sajid Javid.)
 
NICE (National Institute for Health and Care Excellence)
NICE outlines steps needed to put ME/CFS guideline into practice
NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into …..
 
The British Medical Journal response to the NICE announcement
NICE sets out steps NHS must take to implement ME/CFS guidelines
The National Institute for Health and Care Excellence has issued an unprecedented implementation statement1 setting out the practical steps needed for its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) to be implemented by the NHS. 
Such statements are only issued when a guideline is expected to have a “substantial” impact on NHS resources, and this is thought to be the first. It outlines the additional infrastructure and training that will be needed in both secondary and primary care to ensure that the updated ME/CFS guideline, published in October 2021, can be implemented.  The statement is necessary because the 2021 guideline completely reversed the original 2007 guideline recommendations that people with mild or moderate ME/CFS be treated with cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Instead, the 2021 guideline says …
 
 
On M.E. Awareness Day, 12 May, Action for ME (AfME) announced:.
Transforming lives on World M.E. Day
May 12, 2022
Action for M.E. welcomes the Department of Health and Social Care’s pioneering statement on Myalgic Encephalomyelitis (M.E.) on the first ever World M.E. Day.
 
Ministers set out plans for a new cross-Government delivery plan on M.E. for England, aligning with other devolved nations of the UK. The statement, which was made to Parliament today by Health Minister Lord Kamall, is the first time that Government has made an explicit and dedicated statement on M.E.   It’s been backed by a pledge by Health Secretary Sajid Javid to “drive forward progress” and “improve experiences and outcomes for sufferers”.
 
The Government’s statement to parliament also welcomes the launch of the M.E./CFS Priority Setting Partnership (PSP) report Prioritise ME, which sets out the top ten M.E. research priorities identified entirely by people with M.E., carers and healthcare professionals. This initiative, led by Action for M.E. and facilitated by the James Lind Alliance completed a participatory process to identify the Top 10+ M.E./CFS research priorities to change the M.E./CFS research landscape in the UK and beyond.
Questions that Action for M.E. want addressed include whether there is a genetic element to the M.E., if a single test could be developed and whether existing drugs could be used to treat the condition.  The list of priority research areas, as well as downloadable and audio versions of the project report can be found at on the PSP website.
 
Health and Social Care Secretary Sajid Javid said:
“The UK is a world leader in research and Action for M.E.’s priorities lay out clear next steps in learning more about Myalgic Encephalomyelitis (M.E.). M.E. can be an incredibly disabling condition and not enough is known about it – we must drive forward progress in this area to ensure those living with the condition can be better treated and supported. I am committed to improving the lives of people affected - later this year we will develop a delivery plan to understand how we can improve experiences and outcomes for sufferers.”
 
Welcoming the Department of Health and Social Care’s statement and launching the ten priorities, Sonya Chowdhury, Chief Executive of Action for M.E. said:
“For too long people with M.E. have struggled to get their condition diagnosed, understood and acknowledged. On the the first World M.E. Day, it is fantastic to see that this devastating and disability condition is being explicitly acknowledged by Government as priority. This announcement complements the work undertaken through our Priority Setting Partnership, where people of all ages with M.E. have identified their Top 10 list of priorities that would have most impact on their lives to shape future research.  The report has been a powerful opportunity for the voices and lived experiences of children and adults with M.E. to be heard, and empower them to set the priorities for M.E. research themselves, and we look forward to working with Government on their action plan. Through greater partnership working we hope to able to better understand this debilitating disease, with the aim of finding effective treatments and ultimately a cure.”
 
 
Announcements from the ME Research UK (MERUK)
 
UK Parliament and ME/CFS 13 May 2022
Yesterday’s (12 May 2022) highly welcome statement from the Rt Hon Sajid Javid, Secretary of State for Health and Social Care in which he acknowledged
Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS.
is not the only parliamentary initiative on ME/CFS at Westminster. On 11th May, MP Carol Monaghan tabled an Early Day Motion for ME Awareness Week
 
Perth turns blue for International ME Awareness Day 2022 13 May 2022
Thanks to Perth and Kinross Council, various landmarks in Perth turned blue for International ME Awareness Day or purple to mark Fibromyalgia Awareness Day on 12th May 2022.
 
ME/CFS Priority Setting Partnership 13 May 2022
The results of the ME/CFS Priority Setting Partnership were announced yesterday (12th May 2022, International ME Awareness Day) as the culmination of a process to “enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research”.
 
Facilitated by The James Lind Alliance, the JLA method is designed to change the way research funding is granted, and to “raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them”.
These priorities came out of a process which gave a central voice to people with ME/CFS, and theirs are the voices that matter most. ME Research UK is encouraged that the outcome validates and strengthens our single-minded focus on funding relevant and rigorous biomedical research into the disease.
The results of the Priority Setting Partnership provide a useful backdrop as we continue our work and build on our unique position as a pre-eminent funder of ME/CFS research across the world.
 
Top 10 priorities
(We have added links to examples of research that ME Research UK has supported in these areas.)
  1. What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?
  2. Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?
  3. How can an accurate and reliable diagnostic test be developed for ME/CFS?
  4. Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?
  5. Are there different types of ME/CFS linked to different causes and/or how severe it becomes? Do different types of ME/CFS need different treatments and/or have different chances of recovery?
  6. Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?
  7. What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?
  8. Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?
  9. What causes ME/CFS to become severe?
  10. How are mitochondria, responsible for the body’s energy production, affected in ME/CFS? Could this understanding lead to new treatments?
10+. Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?
 
 
Many of the ME Association’s (MEA) announcements [see MEA website for full details]
 
Important Ministerial Statement on ME/CFS May 12, 2022
A statement has been made by Sajid Javid, the Secretary of State for Health and Social Care, which is copied here and can be read directly from the government site from the link below. [see MEA website].
 
NICE outlines steps needed to put ME/CFS guideline into practice
May 12, 2022
Implementation Statement from The National Institute for Health and Care Excellence
NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into practice.
 
Priority Setting Partnership
PSP for ME: Top ME/CFS research priorities identified May 12, 2022
The Top 10+ priorities for research around ME / CFS have been identified.
These priorities have been determined as a result of rigorous work engaging with thousands of people living with myalgic encephalomyelitis, their families and carers, and health professionals working to support these people.
The report is supported by The Rt Hon, Sajid Javid, MP, Secretary of State for Health and Social Care who states:
“I welcome the publication of this Priority Setting Partnership which sets out the Top 10+ research priorities for ME/CFS. The Government recognises that myalgic encephalomyelitis (ME) is an under-researched area and pledges to support research funders and the academic community to respond to this independent report.”
The Rt Hon, Sajid Javid, MP, Secretary of State for Health and Social Care
 
 
The Times: Sajid Javid promises radical action for patients debilitated by ME
May 13, 2022
Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.  The health secretary marked World ME Day yesterday by telling parliament he was “committed to better care and support for people living with ME and their families”.
Read the full article from The Times: Sajid Javid promises radical action for patients debilitated by ME | 13 May 2022
 
Times article: Relative’s suffering triggered Sajid Javid’s ME crusade
May 14, 2022
 
Times article: My daughter couldn’t be saved but there’s hope for other ME patients May 14, 2022
Tragic news from Sean O’Neill at The Times. The ME …
 
 
Science for ME included Sajid Javid’s statement, plus discussion
UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.

•  Action for ME  •  •  Government U.K.  •  M.E. Association  •  MERUK  •  MP  •  National Newspapers  •  N.I.C.E. •  Research  •  Worcestershire M.E. Social Group

ME Awareness Week 2022:  9 - 15 May

9/5/2022

 
 See ME Awareness Week news items on M.E./Fibromyalgia Charities websites  - see 'M.E. /C.F.S. Organisations', and 'UK Research Organisations' websites links and become involved where you can.
 
International May 12th Awareness Day
This year, 2022, marks the 30th anniversary of International May 12th Awareness Day. The idea originated with Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (no longer active). Tom Hennessy was based in the USA but understood that it needed to be an international event; he designated the 12th of May 1992 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
 
May 12 was chosen as it coincided with the birth date of Florence Nightingale, the celebrated English social reformer and statistician, and the founder of modern nursing. Nightingale became chronically ill in her mid-thirties after returning from the Crimean War; the M.E.-like illness often left her bedridden during the last 50 years of her life. You will find a more detailed account in A Short History of Myalgic Encephalomyelitis.

The ME Association ask you to -
Make a wish and join in ME Awareness Week 2022
May 8, 2022
ME Awareness Week starts tomorrow, Monday 9th May, and continues through to a fantastic finale on Sunday, 15th May. During the week, we will be asking you to make frequent use of the hashtag #JustOneWish.
It's the thirtieth anniversary of the event and – with Long Covid rampant round the world – the number of people being diagnosed with ME/CFS is growing exponentially day-by-day.
There are said to be 1.7m people in the UK alone who, months after being infected, still have symptoms of Long Covid - which in so many respects looks just like ME/CFS.
Please do something to help the ME Association meet the challenge of supporting these ever-growing numbers now and in the years ahead.
It's not too late to organise your own fundraiser to support us during ME Awareness Week. Download this little leaflet (pdf) which has lots of ideas for easy-to-arrange fundraising events.
 
Use the hashtag #JustOneWish whenever you can during the week.
The wish is what we have all been crying out for over the years - safe and effective treatments that make people with ME/CFS better.
With our links into the research community, the ME Association is well placed to generate funds that leverage new and promising biomedical research.
In the run-up to the week, we shall be highlighting lots of exciting fundraising going on all round the UK and putting up reminders about the big job of raising awareness of ME/CFS that still remains to be done.
This is your week. It's also the best time of the year to show that you are proud of your achievements and tell the world you're not yet prepared to be forgotten. Please make use of it.
Tony Britton, Fundraising and PR Manager
tony.britton@meassociation.org.uk Mob: 07946 760 811

Last week, Action for ME launched their new five-year strategy, Shaping our future together. -
Shaping our future together: our call for a national strategy for M.E.
May 05, 2022
As we approach the World ME Day on 12 May, we launch Action for M.E.’s new five-year strategy, Shaping our future together. We also have a simple-text version.  Developed in partnership with people with M.E. of all ages, carers and professionals, it sets out four ambitious outcomes which we believe will help us end the decades of ignorance, injustice and neglect faced by people with M.E.
 
Sonya Chowdhury, CEO, Action for M.E. says:
We are calling for a national strategy for M.E. led by the UK Government with a clear implementation plan and significant investment.  Action for M.E. alongside many from the M.E. community work hard behind the scenes to advocate for people with M.E. at all levels, and we hope that we will soon see a long overdue commitment to end the ignorance, injustice and neglect experienced by children and adults with M.E.  We will not stop until this happens.

Sunday 15 May
ME Research UK (MERUK)
are publicising -
Blue Sunday- The Tea Party for M.E.
22 April 2022
Anna Redshaw’s ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held on Sunday 15th May 2022.
As Anna explains
On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes.
We are so often excluded from events because our symptoms can make it so difficult for us to leave the house, let alone spend an hour or two at an event. That’s why the Tea Party For M.E. has always had an online/virtual element running alongside any in-person tea parties.
 
The premise is simple.
  • Wear something blue (pyjamas count!)
  • Dig out your best cups and saucers
  • Bake or buy your favourite cake
  • Post a photo of you little tea party set-up to social media
  • Invite your family and friends to enjoy tea and cake with you, in person or via video call
  • Donate the price you’d pay in a café
  • Connect with others online who are doing the same, by commenting on their photos and posts
  • Feel a part of the in-person tea party as Anna uploads photos and videos from the event she host every ‘Blue Sunday’.
You can share your photos in the Blue Sunday 2022 Facebook Event or on Twitter and/or Instagram using the hashtags #TeaPartyForME2022 #BlueSunday2022
You can donate to ME Research UK directly via JustGiving.

Our local ME/CFS Service
Last month, we publicised the ME Association’s (MEA) request for news https://worcsmegroup.weebly.com/blog/me-awareness-week-2022-9-15-may about your local M/CFS Specialist Service and/or Long Covid Clinic.
Since then, we announced that the ME/CFS Service at Worcestershire Acute Hospital had been decommissioned.
 
How has this affected you?  Is there anything you would like to share, either on this website, or with the MEA?  Just get in touch 


•  Action for ME  •  Coronavirus (COVID 19)  •  Fundraising 
•  Local News  •  M.E. Association  •  MERUK  •  N.H.S.  Post COVID Syndrome (Long COVID)  •  Research  •  Worcestershire  •  Worcestershire M.E. Social Group

Tuesday, 29 March - APPG on ME AGM, plus discussion on work plan for coming year

20/3/2022

 

Please encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME (Myalgic Encephalomyelitis) meeting.
 
The ME Association announced -
Invite your MP to the Next Meeting of The APPG on M.E.
March 16, 2022
 
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 29 March 10:00 - 10:30.  We'd be really grateful if you could invite your MP to attend.  It will be a Zoom meeting and your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).
In addition to reconstituting the APPG, the AGM will include a discussion on our work plan for the next year in relation to the APPG purpose: to seek to improve health, social care, education, and employment opportunities for M.E. sufferers and encourage biomedical research into the cause and treatment of M.E. 
Action for M.E. and The ME Association have agreed to take on the secretariat responsibility for the APPG and will be working to ensure future minutes and announcements are published promptly.
 
See the ME Association, and Action for ME for suggestions how to approach your local MP.
 
 
A reminder -
NICE ME/CFS Guideline Online Talk - 24 March, 2.00 pm
23/2/2022
ONLINE TALK with Dr Charles Shepherd: Making the new NICE guideline work for people with ME.


•  Action for ME  •  A.P.P.G  •  M.E. Association 
•  MP 
•  N.I.C.E.  •  Parliament U.K.

Wednesday, 24 November  - APPG on ME to discuss the new NICE Guideline on ME/CFS

15/11/2021

 
lease encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME (Myalgic Encephalomyelitis) meeting.
 
The ME Association announced -
Next meeting of the All Party Parliamentary Group on ME - the new NICE guideline.
November 11, 2021
 
The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 - 3 pm on 24 November 2021.  This meeting will focus on the new National Institute for Health and Care Excellence (NICE) guideline on ME and the future of ME medical care. 
Three expert guest speakers will address the APPG and answer questions:
Dr Paul Chrisp, Director of the NICE Centre for Guidelines
Dr Peter Barry, Chair of the NICE ME/CFS Guideline Committee
Sonya Chowdhury, Chief Executive of Action for ME
 
This meeting will be an excellent opportunity for MPs and Peers to discuss the new NICE guideline which is expected to be transformational for ME patients across the UK due to the removal of support for damaging treatments such as graded exercise therapy (GET).
Discussion points for the meeting will include the guideline review process, the delay to the release of the guideline, the recommendations of the new guideline, and next steps for guideline implementation.
The overall aim of the meeting will be to raise awareness amongst MPs and Peers of the issues facing people with ME in the UK, in line with the APPG purpose which is to seek to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.
If an MP or peer wishes to attend, they can contact Carol Monaghan MP, Chair of the APPG on ME, by email at carol.monaghan.mp@parliament.uk.
Carol Monaghan will be able to provide further information on the meeting and zoom details.
 
Dr Charles Shepherd, Hon Medical Adviser MEA, states -
This APPG meeting provides an excellent opportunity for people to contact their Westminster MP about any issue relating to the new NICE guideline that they would like to see their MP raise.
In particular, you may wish your MP to raise the local situation regarding implementation of the new guideline recommendations at your local hospital or community based referral service/clinic - if there is one.
 
The Worcestershire ME Social Group website contains NHS ME/CFS Specialist Services (Worcestershire) information.
 
See our Worcestershire blogs for NICE Guideline, and previous APPG on ME news.
 
Take care, and stay safe everyone.

•  Action for ME  •  A.P.P.G  •  M.E. Association  •  MP  •  N.I.C.E.  
•  Parliament U.K.  •  Worcestershire M.E. Social Group
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