• M.E. Association
Please see the update to the blog post- the ME Association #CountMEin Survey closes at 1pm on 31 July.
• M.E. Association The ME Association #CountMEin Survey for everyone who might have symptoms or a diagnosis of ME/CFS and/or Long Covid in the UK,,Channel Islands, and the Isle of Man,
‘Count ME In’ - M.E. charity calls for an end to NHS neglect! The campaign will run during 2023 and the ME Association’s (MEA) will share the survey outcomes which will be produced in December. The MEA Reminder - Count Me In Campaign Survey More than 6000 people with either symptoms or a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Long Covid have already completed our Count Me In survey. Help the ME Association create a true picture of life in the UK, so you can get the support you need. Complete our survey and tell us how ME/CFS and Long Covid affects people like you. For further information, see our previous blog. ME Association #CountMEin survey & campaign • M.E. Association Letters from Worcester MP and NHS H&W. Plus, NHS H&W Advert. The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust Service. This is a specialist part-time service that now delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire. Letters from Worcester MP and NHS H&W At the end of June we received a letter from Robin Walker MP for Worcester, who had been in touch with NHS Herefordshire & Worcestershire (NHS H&W) on our Group’s behalf, regarding concerns about the decommissioning of the local ME/CFS diagnosis service. The response from Simon Trickett, Chief Executive of NHS Herefordshire and Worcestershire ICB, explained the current situation with the diagnostic pathway for patients with suspected ME/CFS.
Simon Trickett advised that the service has not been decommissioned by NHS Herefordshire and Worcester, but the CFS service is under considerable pressure due to recruitment difficulties. He pointed out that this is having a significant impact on Herefordshire and Worcestershire Health and Care Trust’s (HWHCT) ability to safely deliver the service to its patients, and unfortunately the service can only accept patients who have been officially diagnosed with ME/CFS at present. The letters from Robin Walker MP, and Simon Trickett, both refer to a suggested alternative pathway for people who are experiencing ME/CFS pain - the Specialist Pain Management Programme. Plus, NHS H&W Advert. (from MEA website) The ME Association (MEA), raised concerns, Herefordshire and Worcestershire ME/CFS Service - Feedback Required. July 10, 2023 Concerns are, not surprisingly, being raised with us about a job advert for this service and some of the information on the cause of ME/CFS on the website for this service: More information on the Herefordshire and Worcestershire ME/CFS Service BMJ job advert ME Association Comment Dr Charles Shepherd , Trustee and Hon. Medical Adviser Concerns include: In particular, is the use of the term ‘incremental pacing' - as this is not a term that is used in the new NICE Guideline on ME/CFS. The new NICE Guideline makes it clear that incremental increased in activity, along with graded exercise therapy, are no longer recommended (in section 1.11.14 – Box 4). The development of ‘psycho-educational interventions' for both patients and carers is also concerning as it is not clear what this means. Service website It is very disappointing to find in the various information leaflets that some of the main (but unproven) causes of ME/CFS are listed as: Personality Childhood trauma Beliefs and attitudes Excessive rest Mood disorders However, there is no mention of any biomedical abnormalities involving the brain, muscle, endocrine and immune systems. Again, this information is not consistent with current thinking on the cause of ME/CFS, or the new NICE guideline on ME/CFS. Feedback required Before taking this any further with the NHS Trust it would be very helpful to have feedback from anyone who is using/has used this NHS referral service. Please email: [email protected] Update 10.07.23 The Herefordshire and Worcestershire ME/CFS Service responded: Herefordshire and Worcestershire Health and Care NHS Trust In light of the concerns you have raised we have unpublished the job advert and are reviewing it, along With service information on our website. If anyone would like to discuss care they have received, please contact our Patient Advice and Liaison Service (PALS). Details for the PALS team are available on the Trust website: https://www.hacw.nhs.uk/pals Dr Charles Shepherd has sent the following email: Dear Herefordshire and Worcestershire NHS Trust Thank you for withdrawing this job advert so quickly and agreeing to review the content of your website information on the causes and management of ME/CFS - hopefully bringing this into line with all the information and recommendations in the new NICE guideline on ME/CFS. As you will have noted from our social media announcement I was intending to contact you once we had received some feedback from our members on your ME/CFS referral service. Whilst there has been some positive comments on our Facebook page coverage there are several issues of concern that need to be addressed. In particular:
The ME Association produces a wide range of information on all aspects of ME/CFS for both patients and doctors. The following (free to download) publications may be of interest and we would be happy to supply paper copies if required:
Kind regards, Dr Charles Shepherd, Hon Medical Adviser Member of the NICE guideline committee on ME/CFS Worcestershire ME Support Group (Our Group’s Website Blogs & Information): 2023.01.07 - 2023.04.15
Our Group’s blogs of 15 April, 9 March, and 7 January give information received from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services. Marina has been updating us on the situation at the Herefordshire and Worcestershire NHS ME/CFS Local Services, and responding to our queries. Marina’s updates have included “Changes to the Worcestershire NHS Service, following the revised NICE (The National Institute for Health and Care Excellence) Guidelines, published in October 2021”.
New MEA Booklet: Pain Management in ME/CFS by Dr Charles Shepherd July 14, 2023 Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, has written a new booklet on Pain Management in ME/CFS. It can be purchased for £1 from the website shop along with a full range of literature covering other important topics including more detailed information on prescription drugs for pain relief that Dr Shepherd also refers to in this new booklet. Introduction Although a small but significant minority of people with ME/CFS experience little or no pain during the course of their illness, the majority - probably around 75% - do. When pain occurs, it can do so in several different forms and with varying degrees of severity. Knowing what causes pain in any condition can obviously be very helpful in the way it is managed. However, in the case of ME/CFS, no significant research has been carried out into the cause. We therefore know very little about why some people with ME/CFS suffer severe and persistent pain and others have low levels of pain or no pain at all. When it comes to pain management, the best we can do right now is to work on the basis that there may be faults in the way in which messages about pain from various parts of the body - muscle, joints, abdomen, etc - are transmitted up the spinal cord to centres in the brain that control how we respond to pain. Equally, it’s also possible that the way in which these pain control centres in the brain dampen down pain is also at fault. And this is why, in addition to conventional pain-relieving drugs, doctors sometimes prescribe drugs that normally have other uses but affect chemical transmitter systems in the brain. Despite pain being such an important part of ME/CFS, this is one symptom that tends to receive very little attention in medical descriptions of the illness. Consequently, pain is a key symptom that is often not managed very well by health professionals. This MEA article on their website, explains “What sort of pain occurs in ME/CFS?”, plus the “Topics covered in this booklet” 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 • Hereford • Local News • M.E. Association • MP • N.H.S. • N.I.C.E. • Worcestershire • Worcestershire M.E. Social Group Would You Like Afternoon or Morning Café Meetings, and/or Lunches/Afternoon Gatherings at Garden Centres.?
All people with M.E., CFS, FMS, Long Covid, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings Our Lunches and Afternoon Meetings ceased during lockdown, and recommenced in March this year, with a few people affected by M.E. and FMS meeting during the afternoon of the 2nd Wednesday of each month, at the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP. The Past (before the pandemic started)- "We need you, Can You Help” & “The Group and it’s Future". This letter, an extract from the Support Group’s September 2014 newsletter is from Ian Logan, Chair of the Worcestershire ME Support Group prior to its closure at the end of 2016. The letter explained the situation at that time when the Support Group was holding meetings in six locations throughout Worcestershire, as well as monthly gatherings at various Garden Centres. With the new Worcestershire M.E. Social Group, the Garden Centre Lunches organised by Warwick Davis who was previously Vice-Chair of the Support Group, continued. Plus, during the summer months Afternoon Gatherings became available. Sadly, Warwick passed away in July 2021. Future Meetings. Future social group teas could continue at the Next Café, or maybe a new venue, possibly 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. Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information. Meanwhile, future Afternoon Café Meetings for this year will also be on the 2nd Wednesday of each month, at the Next Café. Watch this website for future announcements. • Meetings • Worcestershire • Worcestershire M.E. Social Group Please join us, at our Afternoon Café Meeting on Wednesday, 12 July, 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.)
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 Afternoon Café Meetings for this year will also be on the 2nd Wednesday of each month, at the Next Café. Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information. The Social Group’s Future - Future Café Meetings. 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. • Local News • Meetings • Worcestershire • Worcestershire M.E. Social Group BE COUNTED. BE HEARD. #CountMEin. The ME Association #CountMEin Survey for everyone who might have symptoms or a diagnosis of ME/CFS and/or Long Covid in the UK,,Channel Islands, and the Isle of Man,
‘Count ME In’ - M.E. charity calls for an end to NHS neglect! The campaign will run during 2023 and the ME Association’s (MEA) will share the survey outcomes which will be produced in December. Extracts from the MEA’s announcement on May 22nd - In a first-time test of public opinion, Britain’s oldest charity for people with the energy-sapping disease Myalgic Encephalomyelitis will today start asking hundreds of thousands of sufferers whether they’re satisfied with the support they’re getting from the National Health Service. Martine Ainsworth-Wells, campaigns director at the ME Association, said: “We know the picture will be patchy - but we want to hear directly from people with the illness, or from those still without a diagnosis, how well or indeed how badly they think the NHS is performing.” Today (Monday, 22nd May), the Buckinghamshire-based charity launches a major survey to find the answers. The survey will be backed by a nationwide social media and digital advertising campaign scheduled to last several months. This attempt to reach huge numbers of patients, many of whom have given up on seeing their doctors because of breakdowns in the doctor-patient relationship, has never been tried before. COUNT ME IN. LET YOUR VOICE BE HEARD We are asking people to complete a short survey about their health experiences and the support they have received from the NHS and social care services. This anonymous survey will help us to:
The MEA’s Survey information - We understand that you might not have the energy to complete the survey yourself, so please allow your carer, parent or guardian, family member, or friend, to complete it on your behalf. Thank you for taking the time to complete the survey today for the ME Association. It will take around 10 minutes, and if you aren't able to complete it all in one go, your progress will automatically save and you can return later for up to 3 days. This survey is run by One Minute to Midnight, a market research agency, on behalf of the ME Association. All your answers will be treated in complete confidence in accordance with the Market Research Society Code of Conduct and GDPR. We will not be asking you for any personally identifiable information. Completing this survey will enable the ME Association to:
Further information on the MEA website on June 30, 2023 Take the Survey #CountMEin is a major campaign whose purpose is to reach as many people as we can who think they might be affected by symptoms - or who have a diagnosis - of ME/CFS or Long Covid. Survey Purpose
Further information on the MEA website. - https://meassociation.org.uk/ • M.E. Association Join us next month, on 14 June, at our -
Worcestershire M.E. Social Group Afternoon Café Meeting. Please join us, at our Afternoon Café Meeting on Wednesday, 14 June, 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.) 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 Afternoon Café Meetings for this year will also be on the 2nd Wednesday of each month, at the Next Café. Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information. The Social Group’s Future - Future Café Meetings. 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. • Local News • Meetings • Worcestershire • Worcestershire M.E. Social Group 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. • Action for ME • Hereford • Local News • #MEAction • M.E. Association • Meetings • MERUK • N.H.S. • Post COVID Syndrome (Long COVID) • Worcestershire • Worcestershire M.E. Social Group Please join us, 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, during M.E. Awareness Week.
This 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. (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 . The Social Group’s Future - Future Afternoon Café Meetings. 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. • Local News • Meetings • N.H.S. • 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 is a specialist part-time service that delivers support and treatment to people with ME/CFS within community settings across Herefordshire and Worcestershire. At the end of March, we 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 Herefordshire and Worcestershire NHS ME/CFS Local Services, and responding to our queries. Marina hopes to be with us at our next Worcestershire M.E. Social Group Afternoon Café Meeting (see end of this blog). Changes to the Worcestershire NHS Service, following the revised NICE (The National Institute for Health and Care Excellence) Guidelines, published in October 2021 Marina informed us - We have gone through the changes in the revised guidelines as a team, and developed an action plan to ensure that we are following them. Some of these actions are still work in progress as I'm sure you can appreciate that it is time-consuming, and we are already under a huge amount of pressure carrying out our day-to-day work. However, we check in each team meeting to make sure these have not been forgotten and are still progressing. Actions included changing our language to ME/CFS from CFS/ME (in written format and when speaking), updating our referral protocol and service literature to ensure that they reflect new guidelines, developing a workshop for carers, and compiling a care and support plan. We are in on-going conversations with our commissioner about medical cover and also regarding how we work with people who are severely affected. We were not offering CBT or GET as a 'cure' for ME/CFS so our approach to therapy has not changed - we see these interventions as beneficial for some people, at the correct time, and if applied in an appropriate manner. The Current Worcestershire NHS ME/CFS Specialist Services, - We recently mentioned to Marina - On the NHS ME/CFS Service webpage, it states - “we work as a multi-disciplinary team with Occupational Therapists, Physiotherapists and Psychologists”. Marina’s response included - We have Nikki Mills (Physiotherapist) working in the Post Covid team 1.5 days/week. She doesn't cover ME/CFS, but will offer guidance and resources to the team at times. We are very much hoping to recruit a physiotherapist still and are in the process of going to recruitment again. The PCS service also has access to Carrie Garrett, a Speech and Language Therapist, who offers us approximately 1 session/month. Diagnosing Long Covid Marina informed us - Diagnosing Long Covid is more straight forward than ME/CFS, and GPs seem to feel more comfortable with this as many people have had a positive Covid test, or recognise the symptoms of the Covid virus. If other possible causes of on-going symptoms have been ruled out, Long Covid is diagnosed by the GP. This situation is likely to change, however, as testing is reduced, and new variants have different symptoms which are maybe less recognisable as Covid-19. We anticipate that there will be more referrals to the ME/CFS service, and hope that the distribution of funding will reflect this. It is one of the reasons why it has been decided that the PCS service should sit under the umbrella of the ME/CFS service, to allow some flexibility with this. Referral to the PCS service is mainly via GPs, but other clinicians sometimes refer as well. Previous news from Marina Townend is available from our blog last month. Next Month Marina informed us - I am hoping to come to the Social Group on 10th May. I look forward to seeing you again and will be very happy to answer any questions then. Please join us, when we look forward to greeting Marina at our next Afternoon Café Meeting. This will be held during ME Awareness Week 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. Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information. 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 • Hereford • Local News • Meetings • N.H.S. • N.I.C.E. • Post COVID Syndrome (Long COVID) • Worcestershire • Worcestershire M.E. Social Group |
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