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


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 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 
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APPG Report: Inform your MP about the key issues relating to ME/CFS!.
The ME Association (MEA).  This is the official report from the All Party Parliamentary Group (APPG) on ME that contains key recommendations aimed at increasing research investment and discovery, improving health and social care, and enhancing the lives of people with ME/CFS. It was launched at an official reception with the Rt. Hon. Sajid Javid in May 2022.
 
Last year, the All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) launched an important report - Rethinking ME- and this highlighted vital recommendations to help people with ME receive good quality health and social care. These included the implementation of the 2021 NICE Clinical Guideline on ME/CFS and creating strategies to transform the approach towards ME in health, welfare, social care, research, and education. 
 
Members of the APPG on ME, the former Health Secretary Sajid Javid, and Nicki Strong (Trustee) of the ME Association attended the report’s launch at the Houses of Parliament in May.  The ME Association understands the importance of this report and we believe it will help to shape the future for people with ME and their families.  
 
The Rethinking ME 37 page report is available to download from the MEA’s website.  Plus also available is a template letter to help you write to your local MP .
 
 
Previous ‘Rethinking ME’ Information
 
Sajid Javid ‘Rethinking ME’ after young relative’s battles
1/6/2022
The Times:  Sajid Javid ‘Rethinking ME’ after young relative’s battles. 
A report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis.
 
"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.
 
 
 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


•  A.P.P.G   •  Government U.K.  •  M.E. Association  •  MP 
•  National Newspapers  •  N.I.C.E.
•  Parliament U.K.  •  Research 

Our first Afternoon Café Meeting for this year will be from 2.00 - 3.30 pm, on Wednesday 8 March, 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.
 
Future dates for this year will also be on the 2nd Wednesday of each month, at the Next Café, -
          8 March;
          12 April; 
          10 May; 
          14 June; 
          12 July; 
            9 August; 
          13 September;  
          11 October; 
            8 November; 
          13 December.
 
Before Covid, we had lunches and afternoon café meetings at locations throughout the county.  Concerning future ME Social Group lunches, and further afternoon social gatherings, it has been a case of when to start again after the pandemic lockdowns.  Plus, as we don’t have a membership, and the main contact is via the website, these meetings need to be planned well ahead.  Also, previously the lunches were organised by our friend Warwick Davis, who sadly passed away in July 2021.  Warwick Davis was the Worcestershire ME Support Group’s Vice Chairman and Area Contact for Hagley, and helped with the organisation of the support group’s meetings in Kidderminster.  Many people will also have met Warwick when he organised the Social Group’s Lunches across the county for many years.
 
Future social group lunches/teas could be held at garden centres (etc) in various parts of Worcestershire - where would you like to meet, and could you help? Please discuss this at our afternoon café meetings, or let us know by completing our form.
 
Venues for previous lunches and afternoon social gatherings are listed on our meetings webpage, giving you an idea of locations where we have previously met.   Information will be on the website when these meetings are happening again, and I hope you will then be able to join us for a bite to eat, or just a cuppa and chat.
•  Local News  •  Meetings  •  Worcestershire  •  Worcestershire M.E. Social Group

The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage has recently been updated. 
 
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS).  
We are a specialist part-time service that delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire.
 
To contact the service:
Address: Malvern Community Hospital 185 Worcester Road, Malvern, WR14 1EX
Reception phone number: 01684 612671 (an answerphone is available).
Email: whcnhs.chronicfatigue@nhs.net

This local NHS ME/CFS webpage includes sections on -
About the service
How to refer into the service
What we do
General information
Links and Resources
Following Discharge (includes - Recovery And Management (RaM) group)
Support for families and carers
Carers’ Assessment
 
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

•  Local News  •  N.H.S.  •  N.I.C.E.

New BDA Food Fact Sheet: Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS)
 
Can diet help with ME/CFS?
Your diet should be assessed by your healthcare professional when you are diagnosed.  They will determine if you would benefit from a referral to a dietitian.
 
Seeing a dietitian
Your GP should refer you to a dietitian with a special interest in ME/CFS if you are:

• Losing or gaining weight unintentionally
• Following a restrictive diet
• Living with severe or very severe ME/CFS

 
This British Dietetics Association food fact sheet for ME patients is based on the 2021 NICE (National Institute for Health and Care Excellence) guidelines.
 
The BDA Food Fact Sheet: ME/CFS webpage has a link to their downloadable fact sheet.

•  N.I.C.E.

Marina Townend, Specialist Occupational Therapist/Team Lead, of the ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, informed us -
 “Things have changed significantly over the past couple of years.  The way we operate as a service has changed due to the pandemic, the incidence of post-covid syndrome and the updated NICE guidelines.”
 
Marina is grateful for the NHS Worcestershire ME/CFS Specialist Services  information on the Worcestershire ME Social Group website, and tells us that they are going through the same process themselves but have not been able to make the necessary changes yet.  The Herefordshire and Worcestershire Health and Care NHS Trust website (including the ME/CFS service section) is developed and maintained by the Herefordshire and Worcestershire Health and Care NHS Trust Communications Team so any changes have to go through them.
She added -
“This is helpful from a technical point of view but does slow the process down.  We understand the local ME/CFS and Post Covid Syndrome Services is about to enter into an audit to check that our service is operating in line with the NICE guidelines, and the website will be updated as part of this.”  
 
Marina continued -
“In the midst of the day-to-day busyness, the audit will be a welcome opportunity to take stock and help to direct any changes or improvements that we need to make.  As ever, we are committed to providing a high-quality service to people with ME/CFS across Herefordshire and Worcestershire.  There has been a huge amount of work and, to be very honest, it has felt overwhelming at times.  It is the reason why I haven't kept in touch with you and the wider ME social group, for which I apologise.
From your website, it doesn't look like you are meeting as a social group at the moment but when you start again, I would like to come and update people on some of the changes, catch up with familiar faces, etc.  I will write a summary for your website as soon as I can but please forgive me if that is delayed - as you can see, we have work to do to get our own website up to date first!”
 
Contact information for the Worcestershire ME/CFS and Post-Covid Syndrome Services, through Malvern Community Hospital. (01684 612671, WHCNHS.chronicfatigue@nhs.net and their webpage NHS Worcestershire ME/CFS Specialist Services.

We await further news from Marina Townend and her team.

•  N.H.S. •  Post COVID Syndrome (Long COVID)  •  Worcestershire

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.
 

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The ME Association (MEA) give explanations for everyone, including people on various benefits.
 
Following the Chancellor’s Energy Payments announcement last month -
New energy payments announced by Chancellor
May 26, 2022
The Chancellor has just announced an extensive package to assist households struggling with the cost-of-living crisis.
 
This package will affect all households to some extent, dependent on circumstances, and some may be eligible for multiple payments.
The controversial £200 energy loan that was to be applied to all household electric bills in the autumn has been cancelled and replaced with a £400 non-repayable grant.
The Household Support Fund has also been increased to £500 million for anyone struggling to apply to their local councils for assistance.

• Low Income Payment: Benefit claimants will receive a £650 payment, made by the DWP direct to their bank accounts in 2 lump sum payments in July and later in the Autumn.
• Pensioner Payment: Pensioners who receive the Winter Fuel Payment are eligible for a £300 payment.
• Disability Payment: Disabled people who receive non-means-tested benefits such as DLA, PIP or Attendance Allowance will receive a £150 one off payment.

 
What does this mean for me?
Help with cost of living will apply to the whole of the UK. The maximum payment that you could receive if on means-tested benefits and PIP/DLA/Attendance Allowance (non-means tested) would be: 

• £400 (discount on all domestic energy bills (paid in October): The Energy Bills Support Scheme),
• + £650 (means-tested benefits (Universal Credit, Tax Credits, Pension Credit and means-tested legacy benefits such as Income Related ESA) with a first payment in July, the second in the Autumn), 
• + £150 (non-means tested disability benefits (PIP/DLA paid by September), 
• = £1200 
• + £300 if you are a pensioner (paid as part of Winter Fuel Allowance in November/December).
• And, you should have received - or will soon - a £150 rebate in Council Tax as part of the help being provided to cope with cost of living increases.
• Please read the Government's press release below to learn more. Payments will be made automatically to your bank account. 
• Housing Benefit does not qualify you for additional payments beyond the £400 discount that all households will receive. If you only receive Housing Benefit with no additional means-tested benefit then consider applying for the Household Support Fund which is administered by your local council.

 
BBC News -
Every household to get energy bill discounts of £400 this autumn
 
Government Press Release -
Millions of most vulnerable households will receive £1,200 of help with cost of living
 
-   Ella Smith,  MEA Welfare Benefits Adviser.
 
 
During June, Ella Smith, the MEA’s Welfare Benefits Adviser, gave us two ‘Cost of Living Payment’ explanatory announcements.
 
First Instalment of the £650 payment for qualifying low income households.
Cost of living payment 
June 15, 2022
 
The first instalment of the £650 payment for qualifying low income households in England, Wales, Scotland and Northern Ireland will be paid into bank accounts from 14 July 2022. This instalment will be an automated payment of £326 and the second payment later in the autumn will be £324. The government states that the payments are deliberately unequal due to the time periods used to decide who is eligible, in order to minimise fraud risks.
 
Anyone with an existing claim of the following benefits by 25th May 2022 will receive a payment: Universal Credit, Income-based Jobseekers Allowance, Income-related Employment and Support Allowance, Income Support, Working Tax Credit, Child Tax Credit and Pension Credit. Tax credits claimants will receive their payment slightly later than other DWP benefit claimants to avoid duplicate payments to the same household.
 
This payment will be tax-free, will not count towards the benefit cap, and will not have any impact on existing benefit awards.
Qualifying households do not need to do anything to apply for this payment; it will be made automatically into the bank account they usually receive their qualifying benefit in.
The payment dates for the other cost of living assistance payments to pensioners and to those on qualifying disability benefits will be announced shortly.
 
Government Information -
Cost of Living Payment
 
-   Ella Smith, MEA Welfare Benefits Adviser 
 
 
Cost of Living Payment: Who is eligible for the £650?
June 22, 2022
 
Phoebe, one of the MEA champion bloggers discusses the Cost of Living Payment in a recent blog and highlights that not everyone seems to understand who is eligible to receive the payment and those who will not receive it.
“The £650 for people on benefits does not include disabled people who are on Contribution Based Employment and Support Allowance (CB ESA). This however isn’t being made immediately clear, and I have spent a large portion of today trying to stop the spread of misinformation on Twitter, with many people confidently stating that everyone on Employment and Support Allowance (ESA) will be eligible for the £650, which is not the case. Only those on Income Related Employment and Support Allowance (IR ESA) will receive the £650.
It would be a mistake to assume that the government will help the most vulnerable first, despite them saying that they will help the most vulnerable first, but I can understand why it’s nice to think so.  With this new information, you might be hoping that once people realise that people on Contribution Based Employment and Support Allowance (CB ESA) are being excluded, they’ll make a fuss and it will be corrected?  Again, I can understand why it’s nice to think that will be the case. Disabled people on ESA have been here before.”
 
Phoebe's blog ('Puffins and Penguins') is entitled: Rishi Sunak’s Cost of Living Crisis Measures - Disabled People on ESA Are Losing Out, Again 
 
MEA Comments -
Ella Smith, Welfare Benefits Adviser provides the following information in relation to Phoebe's blog:

• People on Contribution Based Employment and Support Allowance will not be transferred to UC, only those on Income Related Employment and Support Allowance will be put on the new system. This is exactly because Universal Credit is a means-tested benefit that replaces the old, means-tested legacy benefits like Income Related Employment and Support Allowance. As Contribution Based Employment and Support Allowance is contributions-based and not means-tested, it sits outside the Universal Credit scope.
•  This is important when it comes to the cost-of-living payments because someone could be living in a household with a very high income or a lot of capital and still be able to receive Contribution Based Employment and Support Allowance (CB ESA). This is not the case with means-tested benefits because the household circumstances are considered. 
• If someone on Contribution Based Employment and Support Allowance (CB ESA) has no other income or capital coming into the household, it is very likely that they can also claim a means-tested benefit alongside their Contribution Based Employment and Support Allowance.
• Claiming a means-tested benefit is the only way to qualify for the £650 cost-of-living payment because this payment is targeted at LOW INCOME households. As discussed, someone on Contribution Based Employment and Support Allowance (CB ESA) may not be living in a low-income household but everyone on means-tested benefits will be.
• Regarding the information discussed about the Warm Home Discount, this has only been reported in the Mirror newspaper as a potential change. No legislation or further details have been announced as yet by the government. The likelihood of this happening in the current climate is still uncertain but people who claim means-tested benefits in addition to disability payments such as Personal Independence Payment (PIP) still seem highly likely to be able to receive the Warm Home Discount.  The Mirror article is here, with no real details being given. 

 
 
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.

•  B.B.C.  •  Benefits  •  Government U.K. 
•  M.E. Association  •  Worcestershire M.E. Social Group

The Times:  Sajid Javid ‘Rethinking ME’ after young relative’s battles. 
A report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis.
Rethinking ME - APPG on ME Report Launch.
The findings of this report highlights that there has been a long-term disconnect between the treatment deserved by people with ME and what they experience in reality.
“We view these recommendations as a starting point on which to build creative strategies across the governments of the UK, service providers and research institutions for the transformation of our society’s approach to ME. Furthermore, we wish to see the UK take a pioneering stance towards ME research and a compassionate attitude towards people with ME at a time when we are seeing an increasing trend in the development of ME-like symptoms as a result of COVID-19.”
The APPG on ME spent over a year taking evidence from patients, healthcare professionals and charities to produce this report. The 20 recommendations in this report should be considered the starting position for Government policy.
 
Rethinking ME – report launch
The All-Party Parliamentary Group (APPG) on ME met at 3pm on Wednesday 25 May to launch their first report, Rethinking ME. MPs from across the party political divide attended, as well as people with ME, charity representatives and others.
“At this event, 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 with ME on their desire for better care and discuss the steps needed to positively transform the way people with ME are treated in the UK.”  Carol Monaghan MP, Chair of the APPG on ME.
All Westminster MPs (and some members of the House of Lords) were invited by Carol Monaghan MP to come to this meeting, and people with ME were asked to encourage their MP to attend.
 
 
Following the APPG on ME meeting on 25 May -
 
Articles from the ME Association -
 
The Times: Sajid Javid ‘Rethinking ME’ after young relative’s battles
By Sean O'Neill
May 26, 2022
The health secretary has spoken of a young relative’s battle with myalgic encephalomyelitis (ME) as he promised a new approach to the debilitating illness
Sajid Javid said that the health service had failed in its attitude towards treatment of the illness but pledged to lead a cross-government initiative on ME. This would involve healthcare, education and the benefits system, while placing a new emphasis on research into the poorly understood condition. He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.
For further information, see the MEA article, and the full article in The Times.
 
Rethinking ME: ‘These recommendations are considered the starting position for Government policy’ Carol Monaghan, MP
May 26, 2022
‘Rethinking ME' is an important report from The All-Party Parliamentary Group (APPG) on ME and was launched at a reception at the House of Commons yesterday afternoon
In attendance were MPs and Members of the House of Lords, representatives from The Department of Health and Social Care (DHSC), The Department of Work and Pensions (DWP), The National Institute for Health and Care Excellence (NICE), and other Government departments, charity representatives and health journalists. Carol Monaghan spoke about the report and there was a speech from the Sajid Javid – The Secretary of State for Health and Social Care. We will have more from the launch event with the full speeches later today.
 
“Some clinicians try their best but I don’t think the system as a whole realises how serious this issue is and how it has been neglected for far too long”.  Sajid Javid, Secretary of State, Department of Health and Social Care
 
See the MEA full article to find out ‘What does the report contain and recommend’, plus ‘who has received the report’.
 
The BMJ: Health secretary pledges more ME/CFS research as he reveals that relative has condition
May 30, 2022
The BMJ have published an article about the recent All Party Parliamentary Group and the statement made by the Health Secretary Sajid Javid. The article is behind a paywall and some extracts are shown below.
 
Extracts
Patients with myalgic encephalomyelitis (ME) can expect to see more research and support for the condition, which “has been neglected for far too long,” England’s health and social care secretary has said.
Speaking at the launch of a report by the All Party Parliamentary Group on Myalgic Encephalomyelitis on 25 May,1 Sajid Javid revealed that one of his own relatives had had her life severely affected by ME, and he pledged to tackle the lack of research on the condition. He will co-chair a round table of international experts next month to help set this research strategy.
Although he told patients attending the launch that he could not “promise miracles” in finding a treatment, he pledged a new cross-government approach to supporting people with ME, which would encompass not only healthcare provision but also education, work and pensions, and local government. 
 
The i: ‘Doctors need to start believing us’: This is what ME patients say Sajid Javid needs to change
May 30, 2022
The i covers the stories of 3 people with severe ME/CFS and the struggles they have faced which has not been helped by poor treatment from the medical profession.  Yet they are hopeful that the recent statement from Sajid Javid, the All-Party Parliamentary Group on ME Report, and the 2021 NICE Guideline will bring much needed improvements for anyone affected by the condition.
 
The MEA Association article gives extracts from the i report, plus also comments from Tony Britton, PR Manager of the MEA, and Dr Charles Shepherd, Hon. Medical Adviser of the MEA.
 
 
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 APPG on ME official website.
The All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME).  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.
 
•  A.P.P.G  •  Government U.K.  •  M.E. Association 
•  MP  •  National Newspapers  •  N.H.S. •  Worcestershire M.E. Social Group