Previous blog post about Afternoon Café Meetings.
• Local News • Meetings • Worcestershire • Worcestershire M.E. Social Group
The next Worcestershire M.E. Social Group Afternoon Café Meeting will be on Wednesday 12 April, from 2.00 - 3.30 pm, 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.)
Previous blog post about Afternoon Café Meetings. • 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 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 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 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 • M.E. Association • MP • N.H.S. • Worcester City Council • Worcestershire • Worcestershire M.E. Social Group 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.
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:
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:
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 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 (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.)
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 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 [email protected] 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.
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 [Updates about the Worcestershire NHS ME/CFS service are on our 'About M.E' page]
Today (27 April 2022), the Worcestershire ME Social Group received a copy of this notification (pdf). We understand this letter was sent from Dr M Ling Consultant Physician in Infectious Diseases, Worcestershire Acute Hospitals NHS Trust, to Worcestershire GPs in April 2021. The letter explained that “the chronic fatigue service run by infectious diseases with consultant input has been decommissioned last year at Worcestershire Acute Hospital, therefore we are unable to take patients for fibromyalgia or chronic fatigue syndrome.” However, Worcestershire GPs have been informed that “at the time of writing this there is a therapy team with occupational therapists in Worcestershire, care of Malvern Community Hospital, who can deal with treatment of chronic fatigue syndrome and many rheumatology services will have physiotherapists who can deal with fibromyalgia which can be diagnosed normally via the GP using standard criteria which could be discussed with rheumatology if there were any doubt.” The letter also explained “At the time of writing this there are services at the Barberry in Birmingham, Edgbaston, Bath and Bristol with details on the CFS website which may be able to help where diagnosis and management is needed.” • Fibromyalgia • Local News • N.H.S. • Worcestershire • Worcestershire M.E. Social Group |
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