… providing access to research results across many biological disciplines from studies that are focused on advancing our understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).
The mapMECFS website serves as the omics data sharing portal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research, created as part of the NIH funded ME/CFS Network.
This website enables researchers to gain a broader view of ME/CFS by:
Bringing together the data that researchers have collected across the multiple systems affected by ME/CFS
Providing a dynamic navigation portal to search across these domains
Facilitating the integration of complementary data types to offer a new, more complete picture of the disorder
Mission
Our mission is to help ME/CFS researchers discover new insights about the disorder, promote data sharing between experts, and present a comprehensive picture of the hallmarks of this disorder. We hope these efforts help millions of people suffering from ME/CFS by enabling a faster path to better diagnostics and treatments.
Will the World Health Organization’s long COVID definition help or hinder?
WAMES has joined other members of the World ME Alliance in writing to the World Health Organization (WHO) concerning their recently published definition of “post COVID-19 condition”, commonly known as long COVID.
While we commend the work undertaken to ensure people with long COVID are receiving a diagnostic label and subsequent support we remain concerned that a vague definition alone could hinder research and care efforts.
Further work, including stratification of sub-types is vital, and we call on the WHO to engage disease experts from areas such as ME in this.
Read our letter below:
Dear Dr Tedros Adhanom Ghebreyesus, Dr Ren Minghui and Dr Janet Diaz,
On 6th October, the World Health Organization published its definition of post COVID-19 condition (PCC).
Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others* and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.
The undersigned organisations work for the benefit of people with myalgic encephalomyelitis (ME), a noncommunicable disease (NCD) with great experience of vague diagnostic definitions. There are now so many definitions of ME that research often isn’t comparable. Many of these definitions select such a broad population that research outcomes are considered of low or very low quality in systematic reviews. In fact, there is remarkable similarity between some of the definitions of ME and the recent definition of PCC published by the WHO.
We are concerned that this definition will lead to some of the same outcomes for people experiencing PCC as has happened for people with ME. Defined clinical pathways are clearly needed, and we commend the WHO on working towards this. However, now is the time to prioritise the categorisation of subtypes in order to expedite the delivery of appropriate treatment or management approaches for people presenting with different symptoms.
As research into this novel phenomenon develops, various phenotypes are being differentiated, and the WHO definition could emphasise this. (1) In particular, it is of vital importance that post-exertional malaise (PEM) is screened for, and where present people are supported to pace their energy levels within known limits (as per new guidance from the UK’s National Institute for Health and Care Excellence). (2) The findings of the Patient Led Research Collaborative, that “89.1% of participants reported experiencing either physical or mental PEM”, (3) affirm this.
There are many overlaps between the symptomology presenting in PCC and in ME. However, certain subgroups do not experience the symptoms of ME. We must now ensure that people diagnosed with PCC are appropriately sub-categorised, to ensure that we do delay the advancement of scientific understanding through:
misleading data and insignificant findings in research
inappropriate one-size-fits-all care
It is critical to identify and track the disease progressions of different subtypes, including those with ME, to identify risk and resiliency factors when compared to those who recover from COVID and healthy controls. As written, this definition alone will be harmful to critical research in the field.
We strongly encourage the WHO to work with NCD disease experts in related fields to develop guidance for clinical care and researchers that enables screening and tracking of ME and other conditions related to PCC, and fully defines the subgroups and their differentiating/differential symptoms.
The WHO has an opportunity here to make a difference for people with PCC, those with ME, and other NCDs who for many years have been out of the spotlight and largely ignored.
We therefore urge you to work with ME organisations and disease experts to make a statement on the similarities between PCC and ME, and the necessary differences in management approach for those experiencing post-exertional malaise.
Secondly, we urge you to ensure ME organisations and disease experts are central to future efforts to develop clinical care and research into PCC.
And finally, we urge the WHO to initiate education and research into PEM, as it remains such a misunderstood and highly disabling characteristic.
With regards,
Sonya Chowdhury,
Chair of the World ME Alliance
On behalf of the World ME Alliance members:
Action for M.E. ACAF – Associació Catalana d’Afectades i Afectats de Fibromiàlgia i d’altres Síndromes de Sensibilització Central AMMES – The American ME and CFS Society ANZMES – The Associated New Zealand Myalgic Encephalomyelitis Society AQEM – Association québécoise de l’encéphalomyélite myalgique Forward M.E. #MEAction Plataforma Familiars FM-SFC-SQM Síndromes de Sensibilització Central Solve M.E. The ME CFS Foundation South Africa WAMES – Welsh Association of ME & CFS Support
(1) Estiri, Hossein, Zachary H. Strasser, Gabriel A. Brat, Yevgeniy R. Semenov, Chirag J. Patel, and Shawn N. Murphy. “Evolving Phenotypes of non-hospitalized Patients that Indicate Long Covid.” medRxiv (2021).
(2) NICE. “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management” Available at https://www.nice.org.uk/guidance/ng206 (2021)
(3) Davis, Hannah E., Gina S. Assaf, Lisa McCorkell, Hannah Wei, Ryan J. Low, Yochai Re’em, Signe Redfield, Jared P. Austin, and Athena Akrami. “Characterizing long COVID in an international cohort: 7 months of symptoms and their impact.” Available at SSRN 3820561 (2021).
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) are two debilitating, moderately comorbid illnesses in which chronic musculoskeletal pain symptoms are prevalent. These individuals can experience post-exertional malaise (PEM), a phenomenon where symptom severity is worsened 24hr or longer following physical stress, but the pain-related component of PEM is not well characterized.
Design:
Systematic review and meta-analysis.
Methods:
Case-control studies involving adults with ME/CFS or FM and measuring pain symptoms before and after exposure to a standardized aerobic exercise test were included. Hedges’ d effect sizes were aggregated using random effects models and potential moderators were explored with meta-regression analysis. Results were adjusted for nesting effects using three-level modeling.
Results:
Forty-five effects were extracted from 15 studies involving 306 patients and 292 healthy controls. After adjusting for nesting effects, we observed a small-to-moderate effect indicating higher post-exercise pain in patients than controls (Hedges’ d=0.42; 95% CI: 0.16, 0.67). The mean effect was significantly moderated by pain measurement timepoint (b = -0.19, z = -2.57, P = 0.01) such that studies measuring pain 8-72hr post-exercise showed larger effects (d = 0.71, 95% CI = 0.28-1.14) than those measuring pain 0-2hr post-exercise (d = 0.32, 95% CI = 0.10-0.53).
Conclusions:
People with ME/CFS and FM experience small-to-moderate increases in pain severity following exercise which confirms pain as a component of PEM and emphasizes its debilitating impact in ME/CFS and FM. Future directions include determining mechanisms of pain-related PEM and developing exercise prescriptions that minimize symptom exacerbation in these illnesses.
The prevalence of pediatric Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) has been estimated from an ethnically and sociodemographically diverse community-based random sample of 10,119 youth aged 5-17. We assessed whether a salivary biomarker of fatigue could identify youth with ME/CFS.
Study design
We examined the ratio of the concentrations of 2 peptide fragments in saliva, referred to as the Fatigue Biomarker Index (FBI), in participants from our study diagnosed with ME/CFS (n=59) and matched controls (n=39).
Results
Significant overall differences were found in the FBI between those participants with severe ME/CFS and those with ME/CFS and the controls.
Conclusions
If confirmed in other populations, the FBI could serve as an objective test to aid in the diagnosis of severe ME/CFS.
Implement NICE ME/CFS guideline
for safe, empathetic & equitable healthcare
Poor healthcare for many with ME/CFS in Wales
A new WAMES report into the implementation in Wales of the 2007 NICE guideline illustrates how:
few GPs admit being aware of the guidelines and those who do, are often selective in what they implement
many GPs failed to accept that ME is a real, debilitating condition
it is difficult to find GPs who feel confident enough to diagnose
many GPs show patients with suspected ME little ‘respect, sensitivity and
understanding’
very few GPs are able or willing to give patients information about the illness, its management and the possibility of relapses, or help them develop a care plan
there is no accepted management pathway – even if there are specialist teams offering management advice or GET & CBT in an area, GPs often don’t know they can refer patients to them
“I spoke to him about latest research about a connection to autoimmune and he said we’ve done blood tests so you are fine. He said ‘we use NICE and I need to refer you to the psychology team’. He didn’t offer any more help than that.”
Earlier this year, before the publication of the revised NICE guideline for ME/CFS was delayed, WAMES asked people in Wales to tell us about their GP consultations. The response was low but we were grateful to the people who made the effort to share their experiences.
“Following routine bloods, I was called into surgery because of slight weight gain – new GP was confused about ME/CFS, used Internet to come up with GET, had no grasp of what that was, nor any understanding that the NICE Guidelines were under review. Whole thing was a tick box exercise, a wasted GP appointment and no help whatsoever to me.”
It was disappointing to hear the same kind of stories we have been hearing for decades. Patients often count themselves fortunate if a GP admits they have no knowledge, but are still concerned enough to spend time looking for something to help relieve their symptoms!
“The doctors… have poor understanding of the condition, especially the GPs, which of course then filters through to the rest of the practice. Not even a basic level of care, and crass remarks. I visit them as little as possible as it upsets me too much. This very much adds to a sense of isolation, hopelessness and being forgotten about.”
NICE also received many examples of poor care and harm from treatments
The WAMES report also explores the wide range of examples of poor healthcare that the NICE guideline committee received during the revision process. These include:
a lack of belief about ME/CFS as a real condition
a lack of understanding about what it is and the disabling impact it has, especially for the severely affected, including its fluctuating nature
confusing symptoms with signs of abuse or neglect, especially in children or the severely affected
difficulties accessing services due to distance, mobility, sensory overload etc
post code lottery for specialist services
harm reported from unstructured physical activity and inflexible exercise therapy designed to treat deconditioning
The new guideline is a ‘triumph of science over discrimination’.
Patients, and many doctors, researchers and physiotherapists have been vocal in welcoming the new guideline, which has a much improved definition of ME/CFS, a rejection of harmful inflexible therapies (GET & CBT) based on a theory of ‘deconditioning’ and ‘unhelpful illness beliefs’, a focus on energy management to avoid exacerbation of symptoms (PEM).
There is a real opportunity for the 2021 NICE guideline to end the ‘health and social care crisis‘ for people with ME/CFS in Wales.
WAMES is therefore asking the NHS and health professionals in Wales not to delay any longer:
follow the science
listen to patients and carers
begin the process of developing a safe, empathetic and equitable healthcare service for people with ME/CFS
no delay – begin to implement the 2021 NICE ME/CFS guideline today!
Doctors’ leaders reject ‘evidence based’ change, but many believe the guideline can be transformative
On the whole patients are relieved that the revised NICE guideline for ME/CFS has at last been published and are pleased with the change in direction it has taken i.e. that Post Exertional Malaise (PEM) is now a defining characteristic, and that Graded Exercise Therapy (GET) & Cognitive Behavioural Therapy (CBT) are no longer seen as curative treatments, with GET being recognised as having caused harm to patients. Some doctors, health professionals and researchers on the other hand have been vehement in their opposition to the changes.
This was not enough to appease them and following publication of the guideline a number of major UK medical organisations issued a scathing joint statement showing their lack of support for the guideline. The co-signatories of the statement represent thousands of medical personnel (though they were not consulted about the statement) and many CFS services that practise the discredited and now outlawed therapies of GET and CBT as treatments for ME/CFS.
The organisations opposed to the guideline are: Royal College of Physicians; Royal College of Physicians of Edinburgh; Royal College of General Practitioners; Royal College of Psychiatrists; Academy of Medical Royal Colleges; Faculty of Sport and Exercise Med
Their statement emphasises their belief that:
activity and exercise are important in the management of ME/CFS i.e. personalised paced exercise programmes
the phrase GET is unhelpful and this terminology should be dropped
there is a connection between people’s mental and physical health – CBT remains a valuable treatment for alleviating symptoms in ME/CFS
specialist rehabilitation medicine services and exercise medicine services should be able to provide services for people with ME/CFS
the data and evidence had not been assessed correctly
They did not however produce any additional evidence at the Roundtable to support their claims and counteract the evidence underpinning the revised guideline. This was probably the reason their views did not alter the recommendations.
Expert comments
A number of researchers and doctors have been reported in the media to say the evidence supports GET and CBT as treatments, some of the statements coming from the Science Media Centre. Three of the eight professionals giving expert comment on the new guideline for the SMC are unwilling to accept the new narrower definition of ME/CFS or that there is evidence GET can cause harm.
“Researchers from different Institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS. Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. “ Prof Trudie Chalder
The other five professionals writing for the SMC however supported the guideline and believed it was evidence based and could improve care for people with ME/CFS: Caroline Kingdon; Prof Chris Ponting; Dr David Strain; Dr Karl Morten; Prof Kevin McConway.
“This is a transformative step for treatments offered to ME/CFS patients in the UK. I am hopeful that the move away from graded exercise to supporting patients in how they manage their daily activities will lead to more patients entering a recovery phase. It is important that the appropriate support from clinicians and healthcare professionals be put in place and this a key component of the new guidelines.” Dr Karl Morten
“The new NICE guidelines will improve the lives of people with ME worldwide, well beyond England and Wales. They will improve awareness that graded exercise often makes ME symptoms worse. NICE took due care and attention developing these guidelines, applying their rigorous methods and listening to highly regarded professionals and lay people. Low and very low quality scientific evidence was rightly discarded. Graded exercise therapy and cognitive behavioural therapy cannot now be offered as cures. The new guidelines vindicate the longstanding views of many people with ME, their carers and families.” Prof Chris Ponting
Applied statistics professor Kevin McConway examined the criticisms of NICE’s method of evaluating evidence and research, called GRADE, and explained on the SMC site that NICE had found numerous studies on illness definitions and treatments but concluded that many had “Very serious limitations” or “Serious limitations”. Based on the best evidence they could find they decided that GET and CBT were not safe curative treatments for a particular group of patients (those with PEM). They were unable to find evidence for a cure but stated that more research was needed to uncover whether this was the best definition of ME/CFS and what treatments were suitable for the condition.
“Of course, it would be really good news if there were a cure, of whatever sort, but the new guideline makes it very clear indeed that “ME/CFS symptoms can be managed but there is currently no cure (non-pharmacological or pharmacological) for ME/CFS.” Prof Kevin McConway
“Doctors with M.E. considers the launch of this guideline to be a watershed moment in the history of ME/CFS medical care in the UK, with implications that extend to those Long Covid (PASC) patients who also meet ME/CFS diagnostic criteria.”
Physiotherapists embrace change
Physiotherapists have been at the forefront of services using GET with people with CFS. Now the Chartered Society for Physiotherapists(CSP) has come out in support of the guideline:
” I expect all those physiotherapists working with people who have ME/CFS to read the document, reflect on what this means for their practice and make any changes to their practice in light of the revised guidelines.” Natalie Beswetherick, director CSP
The professional group Physios for ME have been active in researching care for patients with PEM and educating colleagues about ‘the known adverse physiological effects of exertion.’ They welcome the guideline.
The over-riding message for physiotherapists is:
“Do not offer people with ME/CFS physical activity or exercise programmes that use fixed incremental increases, based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.”
They do have some concerns about how it will be implemented, believing the information is not just for practitioners specialising in treating people with ME/CFS.
“We feel that education for all physiotherapists needs to be improved regarding ME, in particular the ability to identify and manage post exertional malaise, so that all physiotherapy interventions can be adapted and made suitable for a person with ME.”
Is widespread support for the Guideline possible?
In delaying publication and organising a Roundtable discussion NICE had hoped to secure widespread support for the guideline and was pleased enough with how the discussions had gone to announce:
“We are now confident that the guideline can be effectively implemented across the system and we will discuss the input from the meeting at our Guidance Executive next week with a view to publication of the guideline.”
NICE must have been as disappointed as anyone that the Colleges continued to reject both the evidence base for the guideline and the warning that ‘any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS’. Some commentators have cast doubt on the critics’ ability to recognise scientific evidence:
“As has been widely reported, no substantive concerns were raised at the roundtable. Instead, the Colleges chose to release a controversial joint statement criticising NICE after the guideline was published. It is somewhat peculiar that a group of self-styled “medical leaders” should claim to champion science-based medicine, while simultaneously lobbying NICE to allow patients to be treated using such practices as the Lightning Process.” Prof Brian Hughes quotes the colleges submissions to NICE re the draft guideline.
Prof Tuller has noted that GET researchers have relied on re-affirming the soundness of their own research, without clear evidence, as a strategy which has worked for many years to deflect, discredit and/or squelch legitimate criticism!
Maybe now is the time for the critics to ‘get over themselves’!
Maybe now is the time for the critics to ‘get over themselves’! Yes, it must be disappointing to have exerted so much time and effort ‘backing the wrong horse’ but if they are right and their graded exercise/ activity approach can help some people, then they need to do some work and prove, with high quality research, who those people are. Many in the ME community would say a separation between ME and CFS is long overdue. People with Post-Exertional Malaise would be only too grateful if exercise therapy enthusiasts would direct their attention elsewhere for a change!
“This severe, complex multisystem disease has long been misjudged by the healthcare profession. Educating nurses about the needs of people with ME/CFS will help drive the step change in understanding and belief, compassion and empathy required to care for all patients with ME/CFS.” Caroline Kingdon, research nurse
ME/CFS, a clinical entity of unknown etiology characterized by PEM, is easily diagnosed when following available guidelines.
Patients with ME/CFS typically have small hearts, low stroke volume, and low total blood volume, and some have OI.
More studies are needed to understand the role of deconditioning in producing some of the characteristics of ME/CFS.
Review abstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a medically unexplained illness characterized by severe fatigue limiting normal daily activities for at least 6 months accompanied by problems with unrefreshing sleep, exacerbation of symptoms following physical or mental efforts (postexertional malaise [PEM]), and either cognitive reports or physiological evidence of orthostatic intolerance in the form of either orthostatic tachycardia and/or hypocapnia.
Although rarely considered to have cardiac dysfunction, ME/CFS patients frequently have reduced stroke volume with a significant inverse relation between cardiac output and PEM severity. Magnetic resonance imaging of ME/CFS patients compared with normal control subjects found significantly reduced stroke, end-systolic, and end-diastolic volumes together with reduced end-diastolic wall mass. Another cardiovascular abnormality is reduced nocturnal blood pressure assessed by 24-hour monitoring.
Autonomic dysfunction is also frequently observed with postural orthostatic tachycardia and/or hypocapnia. Two consecutive cardiopulmonary stress tests may provide metabolic data substantiating PEM.
WAMES welcomes the publication of the 2021 NICE guideline for ME/CFS and the decision by NICE to ‘follow the science’ regarding the inappropriateness of GET and CBT as treatments for ME/CFS. Any inflexible treatment based on theories of deconditioning and faulty beliefs, (which encourage people to pushing beyond ones limits) are now recognised to be harmful, and instead Pacing or energy management, (learning to function better within one’s energy envelope), is the recommended management approach.
Add to that the inclusion of Post-Exertional Malaise as an essential diagnostic criteria and we hopefully have a solid base to build a healthcare approach on, while recognising that there is much scope for improvement and research.
We believe that the delay in publishing was a serious error on NICE’s part. It caused immense distress to patients and their families and possible harm, especially to those who are newly diagnosed. It delayed the start of much needed change and failed to achieve the support from health professionals who had objected to the stricter definition of ME and the removal of the therapies they practised.
We are not optimistic that the road to healthcare improvement will be speedy and smooth. Some of the language in the guideline is unclear and open to interpretation, and there is still a significant amount of opposition to implementing the changes, with signs that some services could attempt to rebrand, rather than change their practices. Within Wales there is also little understanding of ME and PEM so it will be harder to share and spread ‘good practice’. We are however committed to working with Welsh Government, commissioners, NHS Wales and Social Care Wales to use the Guideline to start to tackle the healthcare crisis that is ME/CFS in Wales.
WAMES’ medical advisor says:
“As a paediatrician who has had to defend many innocent families of children and young persons with ME from safeguarding proceedings, I hope that the guidelines will finally put a stop to this injustice, and that no longer will young people with ME be labelled as having “Medically Unexplained Symptoms” or being “Perplexing Presentations” as an excuse to refer to social services. Children and young people with ME deserve a firm positive diagnosis from their paediatricians. This will protect them from undue pressures, and lead to appropriate support and help.”
Dr Nigel Speight, WAMES medical adviser
Dr Nigel Speight,
Advisor, WAMES
Honorary Fellow, Doctors with M.E.
Paediatric Physician,
Co- Author, International Consensus Criteria,
Co-Author, Pediatric Primer in Frontiers in Pediatrics,
Advisor, 25% ME Group,
Researcher
More statements:
Below are links to organisations and individuals in the ME community who have reacted with delight and hope for the future, through to cautious longing and anger at the unscientific and bureaucratic delay.
“The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that future children and adults with ME will not repeat the anguish of the past.” (Sonya Chowdhury, CEO, Action for ME)
Doctors with M.E. considers the launch of this guideline to be a watershed moment in the history of ME/CFS medical care in the UK, with implications that extend to those Long Covid (PASC) patients who also meet ME/CFS diagnostic criteria. [Includes quotes from Prof Brian Hughes, Caroline Kingdon, Tom Kindlon, Dr Karl Morten, Dr Charles Shepherd, Dr Nigel Speight, Dr David Strain, Dr William Weir, Dr Asad Khan, Dr Ben Marsh, Dr Shaun Peter Qureshi, Dr KN Hng, Dr Nina Muirhead, Dr Keith Geraghty, Dr Richard Ramyar]
Doctors, and people with ME welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management and support for people with ME – driving major improvements in care
Following the ‘veritable omnishambles ‘ of the pause in NICE guideline publication Invest in ME (IiME) find the 2021 guideline “is only able to attempt to undo the damage done by inaction, ignorance, apathy and negligence during the past 14 years… it stands as a testament to 14 years of nothing much changing for people with ME, 14 years of failure from governments and establishment healthcare and research organisations in treating this disease.”
Overall, #MEAction UK is pleased that the final guideline is a significant improvementon the 2007 CFS/ME guideline…Concerns remain around how the section on incorporating physical activity will be implemented in practice. While some physiotherapists have a clear understanding of ME and can provide helpful support, others will require significant training and education to ensure harmful practices do indeed stop.
After a very through review of all the evidence – from clinical trials, experts and patients – we now have a new guideline that has reversed these recommendations and should be widely welcomed by people with ME… The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help.
The development of the guideline has been a long process mired with controversy, criticism, and unexpected delays. Its final publication, however, represents a historic change for the ME/CFS community… 29 October may turn out to be a historical turning point. Hopefully, this will open the way to more fruitful scientific research on the illness and eventually, a cure.
Today’s publication by NICE of its updated… guideline marks a significant step in both the acceptance of ME as a physical illness and the recognition of appropriate treatment needs of those affected by the condition. We broadly welcome this significant update and improvement to the previous 14-year-old document, but it marks only the beginning of the transformation needed for ME to be more fully understood and, ultimately, for a cure to be found.
MESiG: Today, NICE have finally published the guidelines for ME/CFS. This is a big step in the right direction. Graded exercise Therapy is not to be offered as an effective treatment! #GETisGONE Facebook 29 Oct 2021
The ME Trust welcomes the publication of the new NICE Guideline. We are very pleased… and hope that it will improve the care and support available to people with this debilitating and chronic illness.
Most significantly, the new guidance removes recommendations for Graded Exercise Therapy (GET) due to poor quality evidence, and downgrades recommendations of Cognitive Behavioral Therapy (CBT). This is a historic victoryfor millions with ME/CFS.
Science for ME, an online forum for people with ME/CFS, clinicians, and researchers, has welcomed the much-anticipated publication, calling it a paradigm shift in the care of people with this debilitating condition – hope for change.
Tymes Trust
Virology (Prof Tuller): Trial By Error: NICE liberates new ME/CFS guideline after two-month hijacking nightmare
It is hard to dispute the validity of many concerns raised by critics, including the tally of the damage caused by long-standing policies. Like any clinical guideline, this one is open to abuse by health care professionals who choose to ignore or misinterpret or mis-apply its recommendations. Nonetheless, as another patient noted on Facebook, the publication is a way to “bank some of the progress” that has been made in correcting the scientific narrative—and can serve as an impetus for seeking related changes in medical practice and research.
NICE has today published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
29 October 2021
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
In the press release Paul Chrisp, director of the Centre for Guidelines at NICE, said:
“As well as bringing together the best available scientific evidence, we’ve also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart. NICE hopes that system partners and the ME/CFS community will work together to make sure these important recommendations are implemented.”
Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, said:
“This guideline will provide clear support for people living with ME/CFS, their families and carers, and for clinicians. It recognises that ME/CFS is a complex, chronic medical condition that can have a significant effect on people’s quality of life.
“We know that people with ME/CFS have had difficulty in getting their illness acknowledged, and the guideline provides guidance for suspecting and diagnosing the condition, recognising that there is no specific test for it. The guideline emphasises the importance of a personalised management plan for areas such as energy management – including the importance of rest and staying within the individual’s energy limits – the treatment of specific symptoms, and guidance on managing flares and exacerbations.”
The guideline identifies the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (‘brain fog’). It says that people with all 4 symptoms that have lasted 3 months or more should be directed to a ME/CFS specialist team (in the case of children this should be a paediatric specialist team) experienced and trained in the management of ME/CFS to confirm their diagnosis and develop a holistic personalised management plan in line with this guideline.
People with ME/CFS should receive individually tailored support focused on personal agreed goals and a range of approaches should be used depending on the patient’s preferences and priorities.
And the guideline makes it clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS. Discussions with stakeholders highlighted that the term ‘GET’ is understood in different ways and the guideline sets out clearly what is meant by the term.
The importance of ensuring that people remain within their energy limits when undertaking activity of any kind is also highlighted. The guideline recommends that any physical activity or exercise programmes should only be considered for people with ME/CFS in specific circumstances and should begin by establishing the person’s physical activity capability at a level that does not worsen their symptoms. It also says a physical activity or exercise programme should only be offered on the basis that it is delivered or overseen by a physiotherapist in an ME/CFS specialist team and is regularly reviewed.
Although cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS, the guideline recommends it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.
Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, and vice-chair of the guideline committee, said:
“ME/CFS is a complex long-term condition that causes disordered energy metabolism and can be profoundly disabling. Those with ME/CFS need to be listened to, understood and supported to adapt their lives. The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs.”
Post cerebral blood flow abnormalities do not depend on hemodynamic results and on end-tidal carbon dioxide pressures during the tilt-test.
Post cerebral blood flow abnormalities are most severe in more severely diseased ME/CFS patients.
Research abstract:
Objective:
Orthostatic symptoms in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may be caused by an abnormal reduction in cerebral blood flow. An abnormal cerebral blood flow reduction was shown in previous studies, without information on the recovery pace of cerebral blood flow. This study examined the prevalence and risk factors for delayed recovery of cerebral blood flow in ME/CFS patients.
Methods:
60 ME/CFS adults were studied: 30 patients had a normal heart rate and blood pressure response during the tilt test, 4 developed delayed orthostatic hypotension, and 26 developed postural orthostatic tachycardia syndrome (POTS) during the tilt. Cerebral blood flow measurements, using extracranial Doppler, were made in the supine position pre-tilt, at end-tilt, and in the supine position at 5 minutes post-tilt. Also, cardiac index measurements were performed, using suprasternal Doppler imaging, as well as end-tidal PCO2 measurements. The change in cerebral blood flow from supine to end-tilt was expressed as a percent reduction with mean and (SD). Disease severity was scored as mild (approximately 50% reduction in activity), moderate (mostly housebound), or severe (mostly bedbound).
Results:
End-tilt cerebral blood flow reduction was -29 (6)%, improving to -16 (7)% at post-tilt. No differences in either end-tilt or post-tilt measurements were found when patients with a normal heart rate and blood pressure were compared to those with POTS, or between patients with normocapnia (end-tidal PCO2 ≥30 mmHg) versus hypocapnia (end-tidal PCO2 <30 mmHg) at end-tilt. A significant difference was found in the degree of abnormal cerebral blood flow reduction in the supine post-test in mild, moderate, and severe ME/CFS: mild: cerebral blood flow: -7 (2)%, moderate: -16 (3)%, and severe :-25 (4)% (p all <0.0001). Cardiac index declined significantly during the tilt test in all 3 severity groups, with no significant differences between the groups. In the supine post-test cardiac index returned to normal in all patients.
Conclusions:
During tilt testing , extracranial Doppler measurements show that cerebral blood flow is reduced in ME/CFS patients and recovery to normal supine values is incomplete, despite cardiac index returning to pre-tilt values. The delayed recovery of cerebral blood flow was independent of the hemodynamic findings of the tilt test (normal heart rate and blood pressure response, POTS, or delayed orthostatic hypotension), or the presence/absence of hypocapnia, and was only related to clinical ME/CFS severity grading. We observed a significantly slower recovery in cerebral blood flow in the most severely ill ME/CFS patients.
Significance:
The finding that orthostatic stress elicits a post-stress cerebral blood flow reduction and that disease severity greatly influences the cerebral blood flow reduction may have implications on the advice of energy management after a stressor and on the advice of lying down after a stressor in these ME/CFS patients.
The mapMECFS website serves as the omics data sharing portal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research, created as part of the NIH funded ME/CFS Network.
WAMES has joined other members of the World ME Alliance in 
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) are two debilitating, moderately comorbid illnesses in which 
The prevalence of pediatric Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) has been estimated from an ethnically and sociodemographically diverse community-based random sample of 10,119 youth aged 5-17. We assessed whether a 
Earlier this year, before the publication of the revised NICE guideline for ME/CFS was delayed, WAMES asked people in Wales to tell us about their GP consultations. The response was low but we were grateful to the people who made the effort to share their experiences.
This was not enough to appease them and following publication of the guideline a number of major UK medical organisations issued a scathing 
A number of researchers and doctors have been reported in the media to say the evidence supports GET and CBT as treatments, some of the statements coming from the 
Doctors leaders might be resisting the new guideline but but the campaign group 
The professional group Physios for ME have been active in researching care for patients with PEM and educating colleagues about ‘the known adverse physiological effects of exertion.’ They welcome the guideline.
Add to that the inclusion of 
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
60 ME/CFS adults were studied: 30 patients had a normal heart rate and blood pressure response during the tilt test, 4 developed delayed orthostatic hypotension, and 26 developed postural orthostatic tachycardia syndrome (POTS) during the tilt. Cerebral blood flow measurements, using extracranial Doppler, were made in the supine position pre-tilt, at end-tilt, and in the supine position at 5 minutes post-tilt. Also, cardiac index measurements were performed, using suprasternal Doppler imaging, as well as end-tidal PCO2 measurements. The change in cerebral blood flow from supine to end-tilt was expressed as a percent reduction with mean and (SD). Disease severity was scored as mild (approximately 50% reduction in activity), moderate (mostly housebound), or severe (mostly bedbound).
