News & Updates
ME service in the NHS
reMEmber’s observations on the ME/CFS services in the NHS
- These services were set up more than ten years ago but there has been no national review of them. The model was not to our liking from the start. Our preferred model would have been along the lines of that formerly run by Professor Tony Pinching at Barts, with a consultant who would see all patients referred to the service, who could prescribe medicines, and backed up by a small team of experts eg occupational therapist, community nurse.
- There is not comprehensive coverage. Some places have never had a ME/CFS service. In other places there was once a service which has now closed down. We believe that there is no service at all in Wales and not much in Scotland.
- Some clinics have no doctor attached. In others there is a doctor but he or she may be only part-time. GPs with a Special Interest have been shown not to be the answer; patients need to see an expert doctor, but many do not see a doctor at all at their ME/CFS clinic.
- The deficiencies in these services were highlighted in two important reports in 2017. “Specialist treatment of CFS/ME; a cohort study among adult patients in England” by Bristol University found that two-thirds of patients seen by those services reported, after one year, that their condition was only a little improved, unchanged or worse. Five years after being seen 85% of these patients reported they still had CFS/ME, 9% said they were uncertain and only 5% said they no longer had the condition.
- The second study “Spotlight on specialist services; UK healthcare for people with ME”, produced by AFME found that less than half of the Clinical Commissioning Groups (CCGs) and their equivalents in Northern Ireland, Scotland and Wales commissioned a specialist service for CFS/ME and less than a third recorded any data on how many people in their area had the illness.
- Early, accurate diagnosis is essential, but patients are not seen early enough and there is a high rate of misdiagnosis by GPs (40% at Newcastle and Barts for example)
- Many centres have no domiciliary service or provision for the severely affected who cannot get to an out-patient facility. There is nowhere with an in-patient facility for ME/CFS patients and the ME/CFS clinics do not provide for children with the illness.
- Therapy in the centres is almost entirely CBT or GET (because of NICE and PACE). There are some exceptions; when Dr Amolak Bansal (Immunologist) led the South West London and Surrey service they offered Vitamin B12 by injection, Vitamin D3, mindfulness meditation, hormones including melatonin for sleep disorders, antivirals, antibiotics and Pacing – the therapy preferred by most ME/CFS people. A key point was that these therapies were offered on a personalised basis (not “one size fits all”). We attended their tenth birthday party in 2016; a number of past patients were there, and all said how improved they felt in mind, body and spirit – they knew they were not cured but they were able to manage their condition much better.
- reMEmber has, on a number of occasions, brought these shortcomings to the attention of the DHSC and NHS England. Sir Nicholas Soames, when an MP, and the Countess of Mar have both asked Questions on our behalf in Parliament, but the answer is always the same – that provision for CFS/ME is a matter for the local Clinical Commissioning Groups (CCGs). Our attempts to engage CCGs on this subject have been unsuccessful; looking at ME provision seems to be very low down on their list of priorities.
- However, with the re-organisation of Forward-ME and with the new NICE Guideline in mind, now may be a good time to focus the Health Departments once more on this subject. A united Forward ME would carry much more weight than an individual charity. We suggest pressing for a thorough review of the ME/CFS services within the NHS with a view to establishing a comprehensive, nationwide service. reMEmber recommends:
- All patients to be examined by an expert consultant physician
- Prompt, accurate diagnosis
- A domiciliary service for the severely affected
- A dedicated service for children and young people with ME/CFS.
- Multi-disciplinary teams in all centres
Janice and Bill Kent
POSITION STATEMENT (2021 NICE Guideline Update)
2021 NICE Guideline Update on Treatment and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
On the 10th of November 2020, the National Institute for Health and Care Excel- lence (NICE) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). NICE has updated its 2007 recommendations on the use of psycho-behavioural treatments for ME/CFS, concluding that Graded Exercise Therapy (GET) should no longer be offered to patients and that Cognitive Behavioural Therapy (CBT) is not a treatment or cure for ME/CFS.
Doctors with M.E. (DwME) welcomes and supports this change in treatment recommendations, and we await publication of the final guideline in August 2021. NICE undertook an extensive evidence review and consultation process that involved a wide range of stakeholders, including many clinical experts and patient groups. DwME fully supports NICE’s decision to no longer recommend GET as treatment for ME/CFS. Unstructured exercise or exercise programmes developed for the rehabilitation of patients with other conditions are also not recommended. There is now considerable evidence showing that GET is an ineffective treatment for ME/CFS. Furthermore, there is widespread evidence that GET is harmful – ME/CFS patients suffer a worsening of symptoms and/or chronic deterio- ration in disease severity after undertaking GET.
We concur that CBT is not a treatment or cure. Psycho-behavioural therapies are premised on a refuted model in which ME/CFS is the result of patients holding on to ‘false illness beliefs’ and is perpetuated by patient’s ‘fear avoidance of exercise’. This ‘biopsychosocial model’ of ME/CFS has arguably led to decades of acrimony between the medical professionals who advocate this approach and patients, which has caused considerable distress to many people living with ME/CFS worldwide. Current scientific understanding demonstrates that ME/CFS is a complex multi-system biological disease that profoundly impacts the lives of sufferers, causing disabling symptoms such as extreme fatigue, pain, cognitive impairment, orthostatic intolerance, sleep disturbance and post-
exertional malaise (PEM) /post-exertional symptom exacerbation (PESE). Many patients with the disease stop seeing doctors after encountering disbelief and lack of under-standing.
DwME considers the 2021 NICE guideline to be a watershed moment in the history of ME/CFS medical care in the UK. The new guideline supports a change in ME/CFS treatment towards evidence based foundations, away from psychological therapies and adopting a more physiological and patient-centred approach. There is an opportunity for doctors and patients to come together to develop more concordant and productive relation- ships, whereby GPs and other specialists are supported in offering symptom treatment and compassionate care to people living with ME/CFS.
The removal of GET as a recommended treatment and the downgrading of CBT to being no more than a supportive therapy paves the way for a new era in ME/CFS scientific inquiry and improved clinical care. The Covid-19 pandemic has demonstrated in stark terms that viral illnesses can result in post-viral syndromes that linger for long periods and debili- tate patients. There has been huge demand for appropriate ‘Long COVID clinics’ laying bare the gaps in the existing model of care and the shortcomings of psycho-behavioural thera- pies. DwME will be monitoring research developments in this field. We hope that improved understanding of Postacute COVID-19 Syndrome or ‘Long COVID’, together with the revised NICE guideline for ME/CFS, will act as an impetus for funding bodies to support more high quality biomedical ME/CFS research studies and improved clinical care.
The ME Association regularly updates its information on all aspects of COVID vaccination and collects feedback on adverse reactions.
The latest update, which was published on Sunday 16th May 2021, can be found HERE.
This also includes an update (from the same date) on the situation regarding second dose reactions.
Trying to get into meaningful correspondence with the JCVI on the subject of group 6 eligibility for people with ME/CFS has been a real uphill struggle.
And as far as issuing any form of an alert or investigation into what is happening to some people with ME/CFS, the JCVI will almost certainly pass this to the MHRA – who will want to see evidence from the Yellow Card reporting system that these reactions are occurring.
At the moment the MEA is collecting the evidence and continuing to alert people with ME/CFS that, as with any vaccination, there is a risk that this can cause an exacerbation of ME/CFS symptoms. In a smaller number of people there may be a more severe and persistent exacerbation or relapse to a COVID vaccine.
The MEA’s general guidance on COVID vaccines and ME/CFS can be found HERE.
It is nearly 13 years since Forward-ME was founded with a core group of nine ME charities and support groups. We now have more than 17 charities and associate members. The whole scenario has changed considerably since those early days. Despair has gradually turned to hope. There is more public understanding of ME and, with a few notable exceptions, the professions are exhibiting more appreciation of the complexities of the disease. The rewriting of the NICE Guideline for ME/CFS is eagerly anticipated despite the repeated deferrals of the publication date. Thanks to the work of the UK CFS/ME Research Collaborative, the grant of more than £3 million for a large genomic study of people with ME is under way.
From a personal point of view, I have been rewarded by the determination of all Forward-ME members to set aside their differences and to work together to achieve the objectives we agreed upon at our first meeting. We still have some way to go, but the foundations have been laid for our continued cooperation. I realise that what is needed for our future is a different approach to our relationships with people outside our small community. Instead of the ad hoc basis I have worked under, an efficient system of management would significantly enhance our impact. Good fortune has sent us just the right person in Andrew Morris who has all the skills and experience we need. Additionally, he has a daughter with ME and the determination to improve the world for people with ME. As you will see from the minutes of our meeting on 16 March 2021, he has given the matter much thought and has now said that he is willing to take over from me as Chairman. I will still be around for a while, as it is intended that the changeover should be smooth and it may take a while for Andrew to find his way around. We will work in tandem until I am no longer needed. He is at the front!
It only remains for me to thank everyone with whom I have been involved over 25 years of working with people with ME, particularly members of Forward-ME, for inspiring me, to wish you well and to remind you all that Unity is Strength!
8 April 2021
ANDREW B MORRIS – BIOGRAPHY
Andrew Morris was a leading figure in the events industry for over thirty years, with unique experience in managing stakeholder relationships in family, private equity, local government and franchise business ownership.
He launched the innovative Business Design Centre in Islington in 1986, and in 1999 led the management buy-in of Earls Court & Olympia, acquired from P&O, managing the divestment to St James Capital/Nomura in 2004. He was then appointed CEO of the National Exhibition Centre (NEC) in Birmingham where he transformed the culture from ‘council’ to ‘commercial’, kick starting the long-term masterplan for the site as a leisure destination.
His interest in coaching and leadership led to the acquisition of the Academy for Chief Executives where he became CEO for the next 5 years, subsequently selling to his largest competitor, Vistage, based in San Diego, USA. His book ‘Business to Go’ capturing his approach to how SME’s grow, was published by Troubador in April 2012.
Today, Andrew has a portfolio of interests, helping entrepreneurs develop themselves and their business through mentoring and strategic advice, as well as leadership workshops and facilitation. In 2018 he launched his charity, The Wellside Trust, supporting vulnerable and disadvantaged victims of trauma, loss and racism.
Andrew lives in Hampstead in London with a home in Devon, and his mantra is ‘take your job seriously, but not yourself.’
He has been married since 1976 to a ceramicist, Jennifer, and has three children, Amy, Sophie and Ben, who don’t take him seriously.
NEW Statement ON LONG COVID AND ME - DECEMBER 2020
Statement on long COVID and ME/CFS by the International Alliance for Myalgic Encephalomyelitis December 2020
IAFME is a formal collaboration between national organizations representing patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). SARS-CoV-2 (COVID-19) continues to affect millions of people globally. While some people recover, other people have a delayed recovery and across the world we are now seeing the emergence of a significant group of people who are struggling with a wide spectrum of symptoms similar to ME/ CFS, many weeks or months after their initial COVID infection.
From our experience we know that, like ME/CFS, long COVID is both a real and highly disabling condition. There are, of course, many differences in our experience of long COVID and its relationship to ME/CFS but we have come together as an alliance to share the similarities in our experience in the hope of better outcomes for patients, and their families, experiencing both long COVID and ME/CFS.
Stop, Rest, Pace
We counsel individual patients, medical providers and people operating at all political levels associated with health to advise patients to stop, rest and pace. Patient organisations working in ME/CFS will often have tools or services to assist with this. We encourage medical professionals and long COVID patients to contact ME/CFS organisations in their own country to share appropriate resources and assistance available.
Better outcomes by far are found from advising patients not to push and, as with ME/CFS, not to focus on exercise. Patient health and quality of life is maximised by advocating for and advising that they rest, manage their activities and that their symptoms are treated – as possible and appropriate.
Opportunity for Research
The sudden, dramatic rise of COVID-19 provides a real opportunity for much-needed research into post viral conditions – research which will help both people with long COVID and people with diseases such as ME/CFS. We urge Governments and philanthropists to seize this opportunity to understand what is delaying (or preventing) recovery and – crucially – what restores health to those patients who recover.
We will continue to work collaboratively to ensure that this opportunity is not lost. The neglect of people with ME/CFS must stop. We hope that some good may come from the pain and suffering caused by this pandemic in that it may finally help us to see the investment in research, treatments and care that every single adult and child with ME/CFS and their families deserves.
International Alliance for ME Statement, signed by XXX as a member.
- Our alliance seeks to facilitate a coordinated, simultaneous dialogue with policymakers at national and international levels, increasing its potential impact.
- We encourage the pooling, sharing, and dissemination of advocacy and communication of resources. forward-ME Promoting effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK www.forward-me.org.uk 2
- We promote the expansion of engagement with relevant stakeholders – worldwide organizations sharing the same message is much more powerful than an isolated voice.
Refer also to US ME/CFS Clinician Coalition Letter: Post-COVID “Long Haulers” and ME/CFS October 30, 2020 found at: https://tinyurl.com/y28w3t95
website (www.decodeme.org.uk) :
- DecodeME is very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments. You can read more about how genome-wide association studies (GWAS) have had impact in other disease areas here: https://www.decodeme.org.uk/the-science/
- Details of members of the Decode Partnership/Project Team can be found here: https://www.decodeme.org.uk/about-us/
- Dates: Soft launch in summer 2021 to test processes with an invited group of individuals only; full recruitment launch end September 2021 with study completion August 2024, interim findings at appropriate points.
- FAQ: https://www.decodeme.org.uk/faqs/.