Health services for ME in Wales – a 20 year WAMES update

Health services for ME in Wales – a WAMES update


WAMES in Wales

It is now 20 years since the Welsh Government (WG) was established. At that time NHS Wales became independent and WAMES began campaigning in Wales for improvements to health services.  Over the years we have talked to numerous Health Ministers, civil servants, AMs, Health Board executives and NHS staff. We have taken part in focus groups, stakeholder groups, working groups and scoping exercises. We have run surveys of patient experience and campaigns to raise awareness in government and the NHS.

That is what WAMES has done, largely behind the scenes, to try to improve healthcare for people with ME. How did the Welsh Government and NHS Wales respond?

Welsh Government & ME

  • Since 1999 many AMs over the years have joined us in asking questions about the lack of awareness and services, leading to one of the largest postbags the government have received on a single medical condition.
  • In 2004 a series of Masterclasses were planned around the country.  The interest shown by GPs was so low, only one took place.
  • In 2009 a Task & Finish Group was set up to explore whether a clinical pathway was needed and decided it was.
  • WAMES joined a pathway working group to produce a Map of Medicine pathway for Wales. This was unfortunately based on the NICE guidelines and shortly afterwards the WG withdrew from the Map of Medicine database (based in England).
  • The Health Minister wrote to Health Boards urging them to implement the pathway and improve services. None appeared to do so.
  • In 2013 a second Task & Finish Group was set up with representation from the WG, NHS and patients. A report was published in 2014 outlining steps each Health Board should take to improve services. Few Health Boards have implemented more than one or two of the steps!
  • In 2014 An All Wales Implementation group (AWiG) was set up with reps from WG, the NHS and patients to oversee the implementation of the report.

Has healthcare for ME improved?

It is clear that there is an increase in the number of GPs who have heard of ME, though many still wish to call it CFS and focus on fatigue. There is still a belief that ME is difficult to diagnose and nothing can be done to help. Some still believe it is a psychological condition or that it simply doesn’t exist at all. Many patients tell us they still cannot find someone within Wales to give them an informed diagnosis or to refer them to support services.

WAMES and local groups in Wales still get too many helpline calls from people who are enduring appalling treatment from untrained and prejudiced health care professionals.

The existing services for pain and fatigue continue to offer rehabilitation services based on GET and CBT, though few people with ME are interested. Reports of relapse caused by this approach continue to reach us from people with ME who have undergone the course in NW Wales. Suicides and attempted suicides have increased in number.

Why is progress so slow?

There are many possible reasons contributing to this:

  • Continuing reorganisation and financial difficulties in Health Boards
  • Constantly changing personnel in HBs and Welsh Government
  • Lack of a clinical champion for Wales
  • No funding from the Welsh Government
  • Insistence that answers should come from within Wales, when no-one has sufficient experience or knowledge of ME
  • No obligation for HBs to implement improvements
  • Overworked doctors, who are waiting for a diagnostic test and treatments to materialise before becoming involved with this patient group
  • An unwillingness to look beyond NICE and listen to patients and explore the biomedical research
  • A feeling that ME is controversial due to the continuing activities of a biopsychosocial community that view ME as perpetuated by muscle deconditioning and faulty illness beliefs – in contradiction to the latest research.

WAMES believes that a key stumbling block is the shortage of informed GPs willing and able to diagnose.   Should diagnosis improve there would be statistics of the numbers and location of patients and it would be harder for HBs to ignore ME. The evidence for the need for services for this patient group would then be clear.

What next?

The All Wales Implementation Group (AWIG) has a new government policy lead.

Current work priorities are:

  • Inclusion of ME/CFS in IMTPs (Health Boards 3 year work plans)
  • Redesigning a clinical pathway
  • Developing patient information sheets
    Discussing the development of GP training resources with Health Education and Improvement Wales (HEIW)

WAMES will:

  • continue to represent people with ME on AWiG
  • continue to explore awareness raising possibilities with the RCGP;
  • work with the NHS in devising an ME self-management programme
  • represent Welsh people with ME on the NICE guideline review
  • take every opportunity to raise awareness of neurological ME in NHS Wales

Get in touch if you would like to support WAMES continue its work to improve services for people with ME in Wales


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In the news: Missing from their lives, missing from healthcare services

ME Awareness week – in the BBC news in Wales

“All round the world millions of people are missing from their lives. In Wales people are also missing from the healthcare system.  When we go to the surgery we’re not always treated with respect. Sometimes our illness is dismissed. Too few GPs have the knowledge to diagnose accurately and for those who are bedbound and housebound they can’t always get anyone to come and visit them ,so basically we feel invisible and ignored.”                                                                  Jan Russell, chair of WAMES

BBC Wales featured ME on the radio, TV news and online on 10th and 11th May 2019.

BBC Radio Wales: Good Morning Wales, 11 May 2019. The programme covered the nature of ME, healthcare in Wales & the #MillionsMissing event.

  • An interview with Clare Ogden from AfME took place between 05:40 – 10:00 minutes.
  • From 36:40-43:20 Jan Russell from WAMES spoke and parent Alana Sargent from Tylerstown was interviewed.


BBC Wales: Wales Today on Sat evening, featured the #MillionsMissing event in Cardiff, Marian Gray from Aberystwyth,  comments from Jan Russell of WAMES and Emelyne Burkhardt from MESiG from 02:00 – 04:12.


BBC news online: Humanitarian crisis for ME sufferers in Wales. The online article covers how people go missing from their lives, GPs find it difficult to diagnose & little improvement has been seen in service development. Comments from Marian Gray from Aberystwyth, Jan Russell from WAMES, Miriam Wood from MESiG and Dr Peter Saul from the RCGP.

“People thought I’d moved away or joined a nunnery”, said Marian Gray, who admits going “missing from life”.

She disappeared because she was one of the 13,000 people in Wales battling ME.

Campaigners say there is a “humanitarian crisis” and promises of better support from the Welsh Government have failed to materialise.



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Pathological mechanisms underlying ME/CFS

Pathological mechanisms underlying Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Daniel Missailidis, Sarah Annesley, Paul Fisher in Preprints  [Published  online: 16 July 2019] doi: 10.20944/preprints201907.0196.v1


Review abstract

The underlying molecular basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is not well understood. Characterized by chronic, unexplained fatigue, a disabling payback following exertion (“post-exertional malaise”) and variably presenting, multi-system symptoms, ME/CFS is a complex disease which demands concerted biomedical investigation from disparate fields of expertise. ME/CFS research and patient treatment have been challenged by the lack of diagnostic biomarkers and finding these is a prominent direction of current work. Despite these challenges, modern research demonstrates a tangible biomedical basis for the disorder across many body systems.

This evidence is largely comprised of disturbances to immunological and inflammatory pathways, autonomic and neurologic systems, abnormalities in muscle and mitochondrial function, shifts in metabolism, and gut physiology or gut microbiome disturbances. It is possible that these threads are together entangled as parts of an underlying molecular pathology reflecting a far-reaching homeostatic shift affecting each of these systems.

Due to the variability of non-overlapping symptom presentation or precipitating events such as infection or other bodily stresses, the initiation of body-wide pathological cascades with similar outcomes stemming from different causes may be implicated in the condition.

Patient stratification to account for this heterogeneity is therefore one important consideration during exploration of potential diagnostic developments.


ME/CFS is a heterogeneous condition that may encompass scenarios where uncertain, and possibly varying, underlying insults trigger body-wide molecular and cellular perturbations perpetuated by alternative, stable homeostatic states. Diagnostic advancement and the development of tools which objectively and accurately phenotype patients is therefore paramount for the development of mechanistic insight and effective therapeutics.

It is likely that the inflammation and immune dysfunction classically studied in ME/CFS are entangled with dysfunctional energetics, gut health, or autonomic and adrenal dysregulation. The evidence for metabolic and mitochondrial dysfunction indicates inefficient respiration, impaired provision of TCA cycle substrate, and metabolic shifts towards the utilization of alternative metabolites.

Immune effector cell dysfunction, chronic inflammation, defective signalling and elevated oxidative stress may interact with not only the dysfunctional energetics but also with abnormal gut physiology and microbiota composition. These effects on the gut may also tie back to mitochondrial function and vice versa.

The reciprocal interactions between these affected systems and the varied clinical presentation of relevant symptoms between individuals make it difficult to postulate cause-effect relationships with confidence. Furthermore, while disturbances to this range of interconnected systems across the body have been demonstrated, in some cases concurrently, this body of research has historically relied upon correlations, which creates the urgent need for research utilising direct experimental investigation of cause-effect relationships.

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Current research provides insight into the biological basis & diagnostic potential for ME/CFS

Current research provides insight into the biological basis and diagnostic potential for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), by Eiren Sweetman, Alex Noble, Christina Edgar, Angus Mackay, Amber Helliwell, Rosamund Vallings, Margaret Ryan and Warren Tate in Diagnostics 2019, 9(3), 73; []


Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe fatigue illness that occurs most commonly following a viral infection, but other physiological triggers are also implicated. It has a profound long-term impact on the life of the affected person.

ME/CFS is diagnosed primarily by the exclusion of other fatigue illnesses, but the availability of multiple case definitions for ME/CFS has complicated diagnosis for clinicians. There has been ongoing controversy over the nature of ME/CFS, but a recent detailed report from the Institute of Medicine (Academy of Sciences, USA) concluded that ME/CFS is a medical, not psychiatric illness.

Importantly, aspects of the biological basis of the ongoing disease have been revealed over the last 2-3 years that promise new leads towards an effective clinical diagnostic test that may have a general application.

Our detailed molecular studies with a preclinical study of ME/CFS patients, along with the complementary research of others, have reported an elevation of inflammatory and immune processes, ongoing neuro-inflammation, and decreases in general metabolism and mitochondrial function for energy production in ME/CFS, which contribute to the ongoing remitting/relapsing etiology of the illness.

These biological changes have generated potential molecular biomarkers for use in diagnostic ME/CFS testing.

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Red blood cell biomechanics in CFS

Red blood cell biomechanics in Chronic Fatigue Syndrome, by Amit K Saha, Brendan R Schmidt, Arun Kumar, Amir Saadat, Vineeth C Suja, Vy Nguyen, Justin K Do, Wendy Ho, Mohsen Nemat-Gorgani, Eric SG Shaqfeh, Anand K Ramasubramanian, Ronald W Davis in Summer Biomechanics, Bioengineering and Biotransport Conference papers, June 25 -28, Seven Springs, PA, USA, SB3C2019-221  [Published July 1, 2019]



Chronic Fatigue Syndrome (CFS) is a multi-systemic illness of unknown etiology, affecting millions worldwide, with the capacity to persist for several years. It is characterized by persistent or relapsing unexplained fatigue of at least 6 months’ duration that is not alleviated by rest.

CFS can be debilitating, and its clinical definition includes a broad cluster of symptoms and signs that give it its distinct character, and its diagnosis is based on these characteristic symptom patterns including cognitive impairment, post-exertional malaise, unrefreshing sleep, headache, hypersensitivity to noise, light or certain food items.

Although an abnormal profile of circulating proinflammatory cytokines, and the presence of chronic oxidative and nitrosative stresses have been identified and correlated with severity in CFS, there are no reliable molecular or cellular biomarkers of the disease.

In the present work, we focus on the pathophysiological changes in red blood cells (RBCs) since CFS is a systemic disease rather than of a particular organ or tissue, and RBCs, comprising ~45% of blood volume, are responsible for microvascular perfusion and tissue oxygenation.

RBCs deform and travel through microvessels smaller than their diameter to facilitate the optimal transfer of gases between blood and tissue. The usual shape of a RBC is a biconcave discoid, which is changed to an ellipsoid due to shear flow. This shape gives them a specific surface area-to-volume ratio which facilitates large reversible deformations and elastic transformation [3].

We used a high throughput microfluidic platform to assess the changes in RBC deformability between CFS patients and matching healthy controls. We also performed computational studies to have a better understanding of the cell deformation. In order to explore the mechanisms for observed changes in cell deformability, we explored the membrane fluidity, reactive oxygen species, and surface charge, of RBCs.

Erythrocyte deformability refers to the ability of erythrocytes (red blood cells, RBC) to change shape under a given level of applied stress, without hemolysing (rupturing). Wikipedia


Together, the various estimates show that the RBCs in CFS patients are significantly less deformable than those of healthy controls. We speculate that the larger and less deformable RBCs in CFS patients may partly explain the musculoskeletal pain and fatigue in the pathophysiology of CFS due to impaired microvascular perfusion and tissue oxygenation.

It has been shown that the quality of life of ME/CFS patients was significantly worse as compared to patients with diseases like sclerosis, cancer (multiple types, such as colon, breast and prostate), type II diabetes, rheumatoid arthritis and chronic renal failure, among others.

This work introduces a new paradigm in our understanding of the mechanistic aspects of ME/CFS. It also opens the possibility of a diagnostic platform for ME/CFS using RBC deformability as the biomarker.


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MicroRNAs as biomarkers of pain intensity in patients with CFS

MicroRNAs as biomarkers of pain intensity in patients with chronic fatigue syndrome, by Hadeel A Al‐Rawaf, Ahmad H Alghadir, Sami A Gabr in Pain Pract. 2019 Jul 8. doi: 10.1111/papr.12817. [Epub ahead of print]

Research abstract:


Numerous experimental models have shown that microRNAs play an important role in regulating pain-processing in clinical pain disorders. In this study, we evaluated a set of micro-RNAs as diagnostic biomarkers of pain intensity in adolescents with chronic fatigue syndrome (CFS). We then correlated the expression of these microRNAs with the levels of inflammatory markers and pain-related comorbidities in adolescents with CSF and healthy controls (HCs).


A total of 150 adolescents, aged 12-18 years, participated in this study between April 2016 and April 2017. The participants were classified into two groups: adolescents with CFS (n=100) and HCs (n=50). RT-PCR was used to evaluate the expression of miR-558, miR-146a, miR-150, miR-124, and miR-143. Immunoassay analysis was used to assess the levels of immune inflammatory markers IL-6, TNF-α, and COX-2.


Adolescents with CFS showed significantly higher pain thresholds than comparable non-fatigued HCs. Also, enjoy of life and relation to others as the life domains, showed lower pain interference in CFS patients. Differential expression of miR-558, miR-146a, miR-150, miR-124, and miR-143 was significantly down regulated and notably interfered with pain intensity and frequency in patients with CFS. Also, the expression of these miRNAs was significantly correlated with that of IL-6, TNF-α, and COX-2, which have been shown to mediate pain intensity in patients with CFS.

Girls with CSF showed significantly decreased expression levels of these miRNAs compared with the levels of boys with CSF. Girls with CSF also showed increased expression of inflammatory pain-related markers IL-6, TNF-α, and COX-2, compared with the levels of boys with CSF


The intensity and consequences of pain were influenced by differential expression of miR-558, miR-146a, miR-150, miR-124, and miR-143, which was directly, associated with higher expression of immune inflammatory related genes TNFα, IL-6, and COX-2 in adolescences with CFS. Further studies of larger patient cohorts will help clarify the role of miRNAs in the pathogenesis of CFS.

Read full paper


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Post-Exertional Malaise Is associated with hypermetabolism, hypoacetylation & purine metabolism deregulation in ME/CFS cases

Post-Exertional Malaise is associated with hypermetabolism, hypoacetylation and purine metabolism deregulation in ME/CFS cases, by Neil R McGregor, Christopher W Armstrong, Donald P Lewis and Paul R Gooley in Diagnostics 2019, 9(3), 70; [Published: 4 July 2019]

Research abstract:

Post-exertional malaise (PEM) is a cardinal predictive symptom in the definition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). If the cases overexert themselves they have what is termed “payback” resulting in a worsening of symptoms or relapse which can last for days, weeks or even months.

The aim was to assess the changes in biochemistry associated with the cases self-reported PEM scores over a 7-day period and the frequency of reporting over a 12-month period.

Forty-seven ME/CFS cases and age/sex-matched controls had a clinical examination, completed questionnaires; were subjected to standard serum biochemistry; had their serum and urine metabolomes analyzed in an observational study.

Thirty-five of the 46 ME/CFS cases reported PEM in the last 7-days and these were allocated to the PEM group. The principal biochemical change related to the 7-day severity of PEM was the fall in the purine metabolite, hypoxanthine. This decrease correlated with alterations in the glucose:lactate ratio highly suggestive of a glycolytic anomaly. Increased excretion of urine metabolites within the 7-day response period indicated a hypermetabolic event was occurring.

Increases in urine excretion of methylhistidine (muscle protein degradation), mannitol (intestinal barrier deregulation) and acetate were noted with the hypermetabolic event. These data indicate hypoacetylation was occurring, which may also be related to deregulation of multiple cytoplasmic enzymes and DNA histone regulation.

These findings suggest the primary events associated with PEM were due to hypoacetylation and metabolite loss during the acute PEM response.

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The clinical value of cytokines in CFS

The clinical value of cytokines in chronic fatigue syndrome, by Tiansong Yang, Yan Yang, Delong Wang, Chaoran Li, Yuanyuan Qu, Jing Guo, Tianyu Shi, Wang Bo, Zhongren Sun and Tetsuya Asakawa in Journal of Translational Medicine 2019 17:213 [Published: 28 June 2019]


Research abstract:

Chronic fatigue syndrome (CFS) is a heterogeneous disorder with uncertain pathogenesis. Without effective therapy, CFS is characterized by disabling fatigue, depression, memory loss, and somatic discomfort.

This comprehensive and impartial review aimed to assess the available evidence and examined the potential clinical value of using cytokines for the monitoring of CFS and as targets for the treatment of CFS.

Cytokines are cell signalling molecules that aid cell to cell communication in immune responses and stimulate the movement of cells towards sites of inflammation, infection and trauma.     Dr Ananya Mandal

Inflammatory reactions and immune modulation are considered to contribute to the pathophysiology of CFS, and it is well documented that cytokines present in both blood and cerebrospinal fluid (CSF) are closely associated with the progression and severity of CFS. However, pathophysiological and methodological limitations prevent using circulating cytokines as independent diagnostic indices.

Moreover, there is no evidence to support the use of CSF cytokines as independent diagnostic indices. Nevertheless, a comprehensive evaluation of changes in circulating and CSF cytokines may improve clinical understanding of the pathophysiology of patients with CFS, aiding in the establishment of an appropriate diagnosis.

Importantly, the available evidence does not support the value of cytokines as therapeutic targets. We believe that an improved understanding of cytokine-related mechanisms will be helpful to explore new cytokine-related therapeutic targets.

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Take part in a research project: health conditions & employment

Investigating the impact of health conditions on employees’ experiences of work – a research project

You are invited to take part in a research project looking into the impact explore whether having a health condition affects people’s experiences at work.

The researcher is a Masters student at Kings College London.  The survey will form part of her dissertation in  in ‘Human Resource Management and Organisational Analysis’ and she hopes it will fill an important gap in previous research.

The study:

The purpose of the study is to explore whether having a health condition affects people’s experiences at work. Specifically:

  • whether the ‘visibility’ of people’s health conditions affects things like wellbeing and experiences of discrimination at work
  • whether people tend to disclose their health conditions to their employers and colleagues
  • which factors that might predict disclosure.


  • you should be employed and living in the UK.
  • You do not need to have a health condition to do this survey.
  • Unfortunately, this survey is not suitable for people with learning disabilities, because an Easy Read version of the survey is not available.
  • should read the information sheet before deciding to take part

The questionnaire:

  • is online
  • will take about 10-15 minutes to complete
  • will ask you questions about your job, your health and wellbeing, your experiences of discrimination at work, and how you feel about your organisation
  • nobody except the lead researcher will have access to your personal information
  • your answers will not seen by WAMES or any other organisation
  • if you volunteer to take part, you will be asked to provide your consent & can withdraw at any point
  • your data will be processed in accordance with the General Data Protection Regulation 2016 (GDPR)
  • Please read the info sheet or contact  if you have questions
  • Ethical Clearance Reference Number: HR-18/19-1051

King’s Business School, King’s College London, Bush House, Strand, London WC2R 2LS

Please share your experiences with the researcher and pass this information on so others can take part.

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Why GET and CBT are controversial in CFS

Why Graded Exercise Therapy and Cognitive Behaviour Therapy are controversial in Chronic Fatigue Syndrome, by Michiel Tack in BMJ Medical Humanities blog

Sharpe and Greco ask the interesting question of why cognitive behaviour therapy (CBT) and graded exercise therapy (GET) are controversial in the field of chronic fatigue syndrome (CFS).

One reason is that the type of CBT prescribed for patients with CFS differs from the CBT used in other illnesses. CBT in CFS assumes that patients’ medical condition is reversible through cognitive and behavioral changes. In some trials, participants were encouraged to no longer see themselves as CFS patients.1  If persons suffering from cancer or multiple sclerosis were told that CBT could reverse their illness, one might assume this treatment would be controversial as well.

A second reason is that CFS is considered to be an “exertion intolerance disease”.2  The most characteristic symptom of CFS patients is not fatigue but post-exertional malaise. This means that patients suffer a relapse when they exceed their activity limit. If CFS patients try to push through and do more, they report getting worse.3  This is however what treatments such as GET and CBT aim to provoke.

Patients are instructed to increase their activity level time-contingently and to no longer respond to an increase of symptoms by resting. Most of the randomized trials have not adequately addressed the possible harms of GET and CBT but in multiple surveys, patients report to have been harmed by this approach.4

A third reason is that both GET and CBT label characteristic CFS symptoms as unhelpful cognitive responses.5 When CFS patients, for example, report that physical activity makes their symptoms worse, this is seen as maladaptive avoidance behavior rather than a feature of the illness. When patients think their illness is awful and feel overwhelmed by it, this is labeled as ‘catastrophizing’, even though CFS patients have been found to be more functionally impaired than those with other disabling illnesses. And when CFS patients suspect they are suffering from a yet unknown biological illness, this is described as an unhelpful somatic attribution. With GET and CBT, CFS patients are encouraged to view their symptoms as the result of stress, anxiety or deconditioning, even though scientific evidence for such hypotheses is absent.

A fourth reason why GET and CBT are controversial is that, despite being frequently prescribed, these treatments are not effective in patients with CFS. Randomized trials demonstrate that objective outcomes such as work resumption, disability payments, actigraphy,exercise testing, and neurocognitive functioning do not improve after GET or CBT.6  Studies show moderate improvements on subjective outcomes such as fatigue questionnaires, but at long-term follow-up, there are often no longer significant differences in outcome between patients who received GET or CBT and those who did not.7  Critics claim that researchers have wrongly focused on the short-term improvements on subjective outcomes to assess the effectiveness of GET and CBT. They argue that  because of a lack of blinding and an adequate control condition, these trials should focus on objective outcomes as these are less prone to biases.8   To resolve the controversy of GET and CBT further scrutiny of these  trials is needed.

[1] Bazelmans E, Prins J, Bleijenberg G. Cognitive Behavior Therapy for Relatively Active and for Passive Chronic Fatigue Syndrome Patients. Cogn Behav Pract. 2006;13(2):157-166.

[2] Institute of Medicine, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, The National Academies Press, Washington, D.C., 2015.

[3] Institute of Medicine, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, The National Academies Press, Washington, D.C., 2015.

[4] Kindlon, T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111. Available at:

[5] Tack M. The risk of labelling CFS symptoms as unhelpful cognitive responses. Clin Child Psychol Psychiatry. 2019.

[6] Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187.

[7] Sharpe M, Goldsmith KA, Johnson AL, Chalder T, Walker J, White PD. Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial. Lancet Psychiatry. 2015 Dec;2(12):1067-74.

[8] Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187.

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The risk of labelling CFS symptoms as unhelpful cognitive responses

The risk of labelling CFS symptoms as unhelpful cognitive responses, by Michiel Tack in Clinical Child Psychology and Psychiatry 1–2 [Published June 18, 2019]


Letter to the editor:

Loades, M. E., Rimes, K., Lievesley, K., Ali, S., & Chalder, T. (2019). Cognitive and behavioural responses to symptoms in adolescents with chronic fatigue syndrome: A case-control study nested within a cohort. Clinical Child Psychology Psychiatry. Advance online publication. doi:10.1177/1359104519835583

Loades, Rimes, Lievesley, Ali and Chalder (2019) report that unhelpful cognitive and behavioural responses to symptoms appear to be particularly prominent in adolescents with chronic fatigue syndrome (CFS). Their method to determine unhelpful responses, however, could be questioned.

Catastrophizing, for example, was assessed by how much participants agreed with statements such as ‘my illness is awful and I feel that it overwhelms me’ (Ryan, Vitoratou, Goldsmith, & Chalder, 2018). Descriptions such as these might reflect the severity of symptoms rather than the patient’s response to them. This is particularly relevant as the control group consisted of asthma patients who were less disabled than patients with CFS. Asthma patients had approximately half the score on the Chalder Fatigue Questionnaire and almost 40 points more on the Short-Form 36-item Physical Functioning Scale than patients with CFS. Anyone familiar with these scales will realize the enormous disparity in health reflected by such figures. Consequently, a direct comparison of cognitive and behavioural responses to symptoms might be misleading.

A study that did control for fatigue severity found that CFS patients showed lower levels of catastrophizing, damage beliefs and symptom focusing than patients with autoimmune rheumatic diseases (Ali, Matcham, Irving, & Chalder, 2017). In the hierarchical linear regression model by Loades et al. (2019), all of the cognitive and behavioural responses measured, explained less than 8% of the variance of fatigue at follow-up when baseline factors such as mood and fatigue were accounted for. This is contrary to the view that catastrophizing and symptom focusing are central in driving disability in CFS.

The assessment of fear avoidance is even more problematic as it is based on agreement with statements such as ‘physical activity makes my symptoms worse’ (Ryan et al., 2018). The experience of physical activity making symptoms worse is considered to be the hallmark symptom of CFS, often referred to as post-exertional malaise (Institute of Medicine, The National Academies Press, 2015). Consequently, one would expect most if not all CFS patients agree with this statement.

The National Institute for Health and Clinical Excellence (NICE) guideline, used to select
participants in the study by Loades et al., instructs clinicians to reconsider the diagnosis of CFS if patients do not experience post-exertional malaise (National Institute for Health and Care Excellence, 2007). I would therefore recommend modifying the assessment of fear avoidance in patients with CFS. Otherwise one risks measuring patients’ symptoms and mislabelling them as maladaptive cognitive responses.

Finally, Loades et al. suggest that all-or-nothing, boom-and-bust behaviour patterns exacerbate CFS symptoms in a self-perpetuating cycle. Two large studies, a Dutch (Van der Werf, Prins, Corresponding author: Vercoulen, van der Meer, & Bleijenberg 2000) and Belgian (Meeus et al., 2011) one, have tested this hypothesis using objective outcomes. Patients and healthy controls were instructed to wear an actimeter on several consecutive days to monitor their activity. Both studies found no difference in day-today fluctuations in the activity pattern between CFS patients and controls. Consequently, the view that boom-and-bust patterns of activity are perpetuating symptoms in CFS patients is unfounded.

Read full letter and references

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Could you be the WAMES secretary or treasurer?

WAMES needs a new volunteer secretary and treasurer!



WAMES is very grateful to Kish and Liz for ably supporting the work of WAMES over the last few years.  Increased personal commitments mean they have had to move on.

As the posts of secretary and treasurer are critical to the running of a charity WAMES needs to find new volunteers if we are to continue campaigning, awareness raising and supporting families affected by ME in Wales.

The role of the secretary is to:

  • support the Chair in ensuring the smooth functioning of the Management Committee
  • ensure meetings are effectively organised and minuted
  • maintain effective records and administration.

The role of the treasurer is to:

  • maintain an overview of WAMES’ financial affairs and advise the committee on budgets
  • ensure that proper financial records and procedures are maintained.

To find out more contact Jan

Please note:

  • These volunteering posts are for 3 years starting 1st October
  • Training can be arranged & expenses will be paid
  • Most tasks can be carried out from home
  • The posts are available as ‘role share’
  • You don’t have to be knowledgeable about ME
  • The posts will give useful experience to add to your CV


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