DecodeME study recruitment extended until Sep 2021

DecodeME recruitment update + April webinar


An update from the The DecodeME ME/CFS Study Team, 25 March 2021:

We’d like to update you on the recruitment start date for the DecodeME study, and tell you about an upcoming Q&A webinar on the steps involved in joining.

As you might expect, we’ve faced some delays due to the pandemic. We’ve also adjusted our pace on aspects of our preparation, to make sure that people with ME/CFS could fully contribute to this phase of the study. Their lived experience and expertise is at the heart of DecodeME and we’ve made many changes at their suggestion.

As a result, we’ll now launch recruitment by the end of September 2021 and not May, as we’d originally hoped.

This slight delay will help to ensure that the study runs smoothly once recruitment is under way. In the meantime, we’ve been busy organising ethical approval, creating a robust recruitment plan based on thousands of suggestions from people in the ME/CFS community, and developing and integrating the questionnaire.

We’re delighted that we already have over 23,600 people in the UK who want to take part in DecodeME when we launch. This is remarkable. Thank you.

The DecodeME DNA study aims to help us understand the disease and ultimately find treatments. Sign up to get involved.

Webinar 15 April – find out more!

We’d also like to invite you to our latest Management Group Q&A webinar, which focuses specifically on our recruitment process, so that people wanting to take part in DecodeME know what to expect. The webinar will run from 6:00–6:45pm on Thursday 15 April on Facebook Live. Please visit our Survey Monkey form to indicate that you’ll be attending the webinar and to put forward any questions you have about the recruitment process.

If you missed our last Management Group webinar, you can still view it. Meanwhile, if you have any further questions about the project, please access the regularly updated  FAQs on our website.

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Video: Diagnosed with ME, attending long COVID clinic

Long Covid: ‘It’s like someone has piled sandbags on top of me’

Reece caught coronavirus during the first wave of the pandemic in March 2020, but like many twenty-somethings, he wasn’t hospitalised overnight.

What he thought would be a mild illness became a protracted nightmare with his partner Alice becoming his carer.

Months after his initial infection, he was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) by his GP and referred to a specialist. His CFS/ME consultant later confirmed his CFS/ME symptoms were a form of ‘long Covid’ and referred him to a long Covid clinic [England].

Watch the BBC video                              March 30, 20212

Video Journalist: Lorna Acquah       Executive producer: Kate Forbes

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Deep phenotyping of ME/CFS in Japanese population

Deep phenotyping of myalgic encephalomyelitis/chronic fatigue syndrome in Japanese population, by Toshimori Kitami, Sanae Fukuda, Tamotsu Kato, Kouzi Yamaguti, Yasuhito Nakatomi, Emi Yamano, Yosky Kataoka, Kei Mizuno, Yuuri Tsuboi, Yasushi Kogo, Harukazu Suzuki, Masayoshi Itoh, Masaki Suimye Morioka, Hideya Kawaji, Haruhiko Koseki, Jun Kikuchi, Yoshihide Hayashizaki, Hiroshi Ohno, Hirohiko Kuratsune & Yasuyoshi Watanabe in Scientific Reports volume 10, Article number: 19933 (2020)


Research abstract: 

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease with no molecular diagnostics and no treatment options.

To identify potential markers of this illness, we profiled 48 patients and 52 controls for standard laboratory tests, plasma metabolomics, blood immuno-phenotyping and transcriptomics, and fecal microbiome analysis.

Here, we identified a set of 26 potential molecular markers that distinguished ME/CFS patients from healthy controls. Monocyte number, microbiome abundance, and lipoprotein profiles appeared to be the most informative markers. When we correlated these molecular changes to sleep and cognitive measurements of fatigue, we found that lipoprotein and microbiome profiles most closely correlated with sleep disruption while a different set of markers correlated with a cognitive parameter.

Sleep, lipoprotein, and microbiome changes occur early during the course of illness suggesting that these markers can be examined in a larger cohort for potential biomarker application. Our study points to a cluster of sleep-related molecular changes as a prominent feature of ME/CFS in our Japanese cohort.

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NICE ME/CFS guideline publication delay – Aug 2021

NICE ME/CFS guideline – new publication date



Level 1A, City Tower
Piccadilly Plaza
M1 4BT

 Dear Stakeholder,

Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.

Kind regards,

Katie Stafford, Senior Guideline Coordinator

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Comparative survey of people with ME/CFS in Italy, Latvia, & the UK (EUROMENE)

Comparative survey of people with ME/CFS in Italy, Latvia, and the UK: a report on behalf of the Socioeconomics Working Group of the European ME/CFS Research Network (EUROMENE) by Elenka Brenna, Diana Araja and Derek F H Pheby in Medicina 2021, 57(3), 300; [] (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)


Research abstract:

Background and Objectives:

A comparative survey of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) patients was carried out in three countries, with the aim of identifying appropriate policy measures designed to alleviate the burden of disease both on patients and their families, and also on public institutions.

The survey addressed demographic features, the economic impact of the disease on household incomes, patterns of medical and social care, specific therapies, social relationships, and the impact of the illness on quality of life.

Materials and Methods:

Parallel surveys were undertaken in Italy, Latvia, and the UK. There were 88 completed responses from Italy, 75 from Latvia, and 448 from the UK. To facilitate comparisons, 95% confidence intervals were calculated in respect of responses to questions from all three countries. To explore to what extent general practitioners (GPs) manage ME/CFS disease, a separate questionnaire for GPs, with questions about the criteria for granting a diagnosis, laboratory examinations, the involvement of specialists, and methods of treatment, was undertaken in Latvia, and there were 91 completed responses from GPs.


The results are presented in respect of sociodemographic information, household income, disease progression and management, perceived effectiveness of treatment, responsibility for medical care, personal care, difficulty explaining the illness, and quality of life. Demographic details were similar in all three countries, and the impact of illness on net household incomes and quality of life. There were significant differences between the three countries in illness progression and management, which may reflect differences in patterns of health care and in societal attitudes. Graded exercise therapy, practiced in the UK, was found to be universally ineffective.


There were similarities between respondents in all three countries in terms of demographic features, the impact of the illness on household incomes and on quality of life, and on difficulties experienced by respondents in discussing their illness with doctors, but also differences in patterns of medical care, availability of social care, and societal attitudes to ME/CFS.

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WAMES statement on post-viral illnesses: COVID-19 & ME/CFS

WAMES statement on post-viral illnesses: COVID-19 and ME/CFS


WAMES is calling on all political parties in Wales to support an inclusive approach to responding to COVID-19 and ME/CFS.

Wales needs a strategy to recognise and treat illnesses triggered by ALL viruses.


What we know about post-COVID illness:

  • Almost 70%  of people affected by COVID experience damage to organs and lingering symptoms.
    10-20% are thought to experience a collection of symptoms which is being called Long COVID, including fatigability, breathlessness, brain fog, pain, sleep disturbance, palpitations. In Wales there are an estimated 15,000 patients with Long COVID.
  • Long COVID is being recognised as a health crisis and the NHS is beginning to consider how they can support patients, some offering psychological and exercise therapies.
  • People who have been hospitalised by COVID-19 are offered referrals, management advice and treatment. People with minor symptoms (or who are asymptomatic) can also develop long lasting symptoms but are not always believed by their GP and can be refused support or referrals.
  • Some Health Boards are developing exercise therapy or virtual self-management classes. The COVID Recovery app has been launched in Wales “to reassure those people that there is support available to them and that they are not alone.” Not everyone has been able to access the app.
  • Based on data from other viruses, including a previous SARS virus, a percentage of survivors will go on to develop the long term condition ME/CFS, possibly as high as 27%

What we know about ME/CFS:

  • A large percentage of people with ME/CFS are aware that they developed the condition following a virus. Doctors suspect that many more also experienced a virus but haven’t made the connection between that and developing ME/CFS.
  • ME/CFS is classified by the World Health Organisation as ‘a condition of the nervous system’ at G93.3 along with other recognised neurological conditions.
  • Research is uncovering widespread dysfunction in many of the body’s systems with the body unable to produce energy to maintain those systems efficiently. The key characteristic for patients is Post-Exertional Symptom Exacerbation (PESE) also known as Post-exertional Malaise (PEM), which is also experienced by many people with long COVID.
  • There are an estimated 13,000 people of all ages with ME/CFS in Wales, approximately 25% of whom are severely affected. If up to 27% with long COVID were to go on to develop long term ME/CFS, the number of people with ME/CFS could rise to over 17,000 in a year or two.
  • Many doctors still do not recognise ME/CFS as a serious long-term, life altering condition and do not refer disabled patients to support services.
  • Health Boards in Wales have been resistant in recognising and offering services for ME/CFS. Three offer psychological and exercise therapies for small numbers of patients with fatigue, alongside pain patients. ME researchers have been warning about the dangers of exercise therapy for decades so many people with ME/CFS have chosen not to access those services.
  • Infections, alongside activity, can lead to relapse and severe illness in ME/CFS, but the condition has not been specifically recognised and included with other neurological conditions, amongst those needing to shield from COVID-19, or be prioritised for vaccination.

What does the WHO and NICE say about long COVID & ME/CFS?

  • The WHO calls on countries to recognise the ‘impact on the individual, on society, and on the economy’ of Post-COVID syndrome, to prioritise rehabilitation and systematically gather information – to practice the “three Rs”—recognition, research, and rehabilitation.
  • The WHO has made no statement about ME/CFS, which affects an estimated 20 million people worldwide.
  • NICE issued a cautionary notice in 2020 for Long COVID which questioned the appropriateness of exercise therapy.
  • NICE issued rapid guidelines for COVID-19 in Dec 2020 which acknowledged the need for supported self-management based on multi-disciplinary clinics and goal-setting, but without specific guidance on the nature of management options.
  • NICE reversed its 2014 ME/CFS guidelines in the 2020 draft, no longer recommending exercise therapy and highlighting the need to manage Post-Exertional Symptom Exacerbation (aka PEM). The final version, which is expected to continue to recommend multi-disciplinary services for ME/CFS, is due out 21 April 2021.

WAMES believes it is right that people suffering from post-COVID symptoms should receive appropriate support from health and social care. It is not right that the NHS and social services should continue to minimise and ignore the debility triggered by other viruses. Now is the time to put right past omissions and put in place appropriate services for ALL survivors of viruses.

In 2020 WAMES called on the Welsh Government to lead the way in caring for ALL survivors of viruses, without discrimination. The response from the Health Minister did not address the issue. WAMES is able to supply more information about any of the issues mentioned above.

Jan Russell, Chair

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Senedd election hustings start 25 March 2021 – ask candidates about health & social care issues

Wales Neurological Alliance Hustings 2021


The Senedd Cymru (Welsh Parliament) election on Thursday 6 May 2021 is a great opportunity to influence politicians and make a real difference for people living with neurological conditions in your local area.

The Wales Neurological Alliance is hosting a series of election hustings to give candidates from each of the main political parties an opportunity to explain how they would improve health and social care services in Wales if elected, as well as explaining what local issues they would champion.

Building relationships with Members of the Senedd is vital to our efforts to improve services for people living with neurological conditions. Please come along and make them aware of the issues that affect you!

Find candidates

Questions to candidates can either be asked on the day or submitted in advance to   Register in advance for the meetings.

South Wales East:

Thursday 25th March 4pm – 5:30pm via zoom  Register in advance

North Wales:

Thursday 1st April 4pm – 5:30pm via zoom Register in advance

South Wales West: 

Monday 29th March 4- 5:30pm via zoom  Register in advance

South Wales Central:

Thursday 8th April  4-5.30 pm via zoom Register in advance

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In-depth analysis of the plasma proteome in ME/CFS exposes disrupted ephrin-Eph and immune system signaling

In-depth analysis of the plasma proteome in ME/CFS exposes disrupted Ephrin-Eph & immune system signaling, by Arnaud Germain, Susan M Levine & Maureen R Hanson in Proteomes 2021, 9(1), 6 [] Jan 2021 (This article belongs to the Special Issue Functional Proteomics 2020)


Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling disease with worldwide prevalence and limited therapies exclusively aimed at treating symptoms.

To gain insights into the molecular disruptions in ME/CFS, we utilized an aptamer-based technology that quantified 4790 unique human proteins, allowing us to obtain the largest proteomics dataset yet available for this disease, detecting highly abundant proteins as well as rare proteins over a nine-log dynamic range.

Proteins are large, complex molecules that play many critical roles in the body. They do most of the work in cells and are required for the structure, function, and regulation of the body’s tissues and organs.   (Medline)

We report a pilot study of 20 ME/CFS patients and 20 controls, all females. Significant differences in the levels of 19 proteins between cohorts implicate pathways related to the extracellular matrix, the immune system and cell–cell communication. Outputs of pathway and cluster analyses robustly highlight the ephrin pathway, which is involved in cell–cell signaling and regulation of an expansive variety of biological processes, including axon guidance, angiogenesis, epithelial cell migration, and immune response. Receiver Operating Characteristic (ROC) curve analyses distinguish the plasma proteomes of ME/CFS patients from controls with a high degree of accuracy (Area Under the Curve (AUC) > 0.85), and even higher when using protein ratios (AUC up to 0.95), that include some protein pairs with established biological relevance.

Our results illustrate the promise of plasma proteomics for diagnosing and deciphering the molecular basis of ME/CFS.

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We already know enough to avoid making the same mistakes again with Long COVID

We already know enough to avoid making the same mistakes again with Long COVID, by Todd E Davenport, Staci R Stevens, Jared Stevens, Christopher R Snell, J Mark Van Ness in JOSPT Blog, March 10, 2021 []


Blog post:

Based on experience with past coronaviruses, the emerging challenge of prolonged symptoms after infection with the novel coronavirus 2019 (SARS-CoV-2) is unsurprising. Data from a large international web-based patient survey indicate substantial symptom overlap between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at 6 months following the onset of first symptoms, including three quarters of participants suffering from fatigue and postexertional malaise, and over half with cognitive dysfunction.4 Apparent similarities between the presentations of long COVID and ME/CFS suggest that we may apply what we have learned from ME/CFS to long COVID.

Avoid the Tower of Babel phenomenon
The biblical parable of the Tower of Babel cautions that the pursuit of truth may lead to the inability to communicate. Although case definition criteria appear to have become more specific over time, the various names for and definitions of ME/CFS have created confusion and consternation in the patient and clinical communities. Already, several different labels for long COVID exist, even while optimal diagnostic criteria remain unclear. The consensus of the patient community has coalesced around referring to their experiences as “long COVID” and to themselves as “long haulers.” The clinical and research communities should honor the patient perspective by using this label to avoid alienating the patient community and creating confusion. Patients ultimately own and derive meaning from their diagnostic label, not any single area of clinical and scientific endeavor.

Hear, validate, and empower patients with long COVID
It has been estimated that 90% of ME/CFS cases may remain undiagnosed,5 suggesting that people with postviral fatigue already are substantially undercounted, underdiagnosed, and undertreated. The time between initial symptoms and diagnosis in ME/CFS cases is often long. The diagnostic process for ME/CFS is frustrating, because it is often seen as a diagnosis of exclusion. This process of medical evaluation is often exhaustive and expensive, and does not yield a result that leads to a cure.

Mischaracterization of ME/CFS as a psychiatric condition is common.5 It is a generally stigmatizing condition, because symptoms and activity limitations may wax and wane from day to day, resulting in “good days” and “crash days.” This symptom pattern, which may appear as malingering or secondary gain to the uninitiated or uncompassionate clinician, is characterized by an invisible source of disablement underpinned by a fluctuating physiological baseline. Physical therapists should respect and validate symptom reports made by patients in good faith.

Acknowledge the apparent physiological basis of long COVID
People with ME/CFS generally demonstrate a blunted rise in heart rate with increasing activity intensity on cardiopulmonary exercise testing, which is called chronotropic intolerance.3 Heart rate responses to activity are further blunted during the postexertional state, which is observed at peak exertion and the ventilatory anaerobic threshold.3 Chronotropic intolerance may provide important insight into the physiological basis of fluctuating activity tolerance in ME/CFS cases, because it suggests cardiac autonomic dysregulation.3 The cardiac autonomic dysregulation observed on cardiopulmonary exercise testing may be associated with clinical observations of postural orthostatic tachycardia and orthostatic hypotension in ME/CFS.

Patients with long COVID also have reported aberrant heart rate responses to exercise, including an increase in resting heart rate and orthostatic impairments. The apparent similarity in aberrant heart rate responses to exercise between ME/CFS and long COVID should be the subject of careful study. Yet, this relationship also suggests that activity pacing through heart rate monitoring may be useful for patients with long COVID, as it is for patients with ME/CFS.

Teach Respect for physiological activity limits in long COVID
Physical therapists must approach exercise prescription in long COVID with vigilance and caution, to ensure that the exercise program is restorative and not making the patient’s symptoms worse. Exercise should not cause symptoms of postexertional malaise. One useful way to monitor symptoms is to specifically ask about them in all patients with long COVID as part of the assessment process. The physical therapist may use validated questionnaires or a narrative approach to asking the patient to characterize her or his top lon COVID symptoms in response to exercise.

Further, exercise should not be undertaken to the exclusion of the patient’s desired daily activities. Black et al2 found that a graded exercise program increased step counts in people with ME/CFS. A secondary analysis of the data revealed that an increased step count was a self-fulfilling prophecy of the graded exercise program, because it did not increase the accelerometer count associated with usual daily activity.1 Physical therapists should be aware that patients with long COVID may adhere to graded exercise programs that cause diminishing returns in daily functioning.

While we are learning something new each day about the consequences of SARS-CoV-2 infection, our collective experience with postviral fatigue is not entirely new. We know enough as a clinical and scientific community to avoid the same perils and pitfalls of ME/CFS when dealing with a novel coronavirus, even as we continue to research the best possible diagnostics and therapeutics.


  1. Black CD, McCully KK. Time course of exercise induced alterations in daily activity in chronic fatigue syndrome. Dyn Med. 2005;4:10.
  2. Black CD, O’Connor P J, McCully KK. Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome. Dyn Med. 2005;4:3.
  3. Davenport TE, Lehnen M, Stevens SR, VanNess JM, Stevens J, Snell CR. Chronotropic intolerance: an overlooked determinant of symptoms and activity limitation in myalgic encephalomyelitis/chronic fatigue syndrome? Front Pediatr. 2019;7:82.
  4. Davis HE, Assaf GS, McCorkell L, et al. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact [preprint]. medRxiv. 2020.
  5. Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press; 2015.

[Reuse of JOSPT blog content is permitted under the Creative Commons BY-NC-ND (CC-BY-NC-ND) license.]


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The PACE trial should be retracted because it was seriously unethical

The PACE trial should be retracted, because it was seriously unethical, and the lead investigators continue to deny that, by Dr Neil McFarlane in DrNMblog, 19 March 2021

This was submitted (December 2020) to NICE in response to the new draft ME/CFS guidance of November 2020, which had removed the recommendation for Graded Exercise Therapy (GET), and downgraded CBT from therapeutic to a ‘supportive’ option.

I appear to be the first UK psychiatrist to be openly critical of the PACE trial.

My submission:

The PACE trial was seriously unethical. The senior researchers continue to deny this, despite the clear evidence. Therefore the trial is not only at ‘high risk of bias’, but at significant risk of fraud, and it should be retracted as a trial of treatments…


…The PACE trial may be of some historical interest and even future relevance in relation to depression and anxiety in ME/CFS, and on the issue as to whether CFS might validly be considered a separate condition from both ME and depression, as appears to be the view and experience of some patients and some PACE-independent professionals.

The reported rates of anxiety syndromes plus depression (47%) and depression alone (34%) were high. Many people do find CBT helpful as a form of support for those conditions, so it is reasonable for NICE to recommend CBT as a form of support, but a caution should be added about the risk of harm, especially if coercion might encroach. This caution might be reinforced by adopting the term ‘cognitive behavioural support’, or ‘CBS’, in place of ‘CBT’. NICE should also recommend research into other forms of psychosocial support.

The reported rate of ‘post-exertional malaise’ (PEM/PENE) was also high (82-87%), suggesting that its presence or absence cannot be used as the sole criterion for ME/CFS. That is an issue which continues to concern ME/CFS patients and PACE-independent professionals, and therefore justifies further research, especially on the question of whether some people with non-ME/CFS depression have similar PEM. If there is a separate ‘CFS’ entity, then the nature and degree of PEM in that would also be relevant.

Read the full article

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