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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A cross-national comparison of ME & CFS at tertiary care settings from the US & Spain

A Cross-National Comparison of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome at Tertiary Care Settings from the US and Spain, by Shaun Bhatia, Nicole Olczyk, Leonard A. Jason, Jose Alegre, Judith Fuentes-Llanos, Jesus Castro-Marrero in American Journal of Social Sciences and Humanities Vol. 5, No. 1, 104-115, 2020


Highlights of this paper:

  • Cross-cultural comparative studies serve as exemplars highlighting the challenges associated with assessing differences in symptoms, functional limitations, and work disability when using variant case definitions for ME and CFS. 
  • Using a single case definition, differences were observed on an array of symptoms and functional impairments from individuals with ME and CFS recruited at tertiary centers from the US and Spain. 
  • Disparity in ME and CFS symptomatology and impairment between the US and Spain may be attributed to differences in disability policy, perception of ME and CFS, and access to specialist care.

Research abstract:

Cross-national comparative studies are useful for describing the unique characteristics of complex illnesses, and can reveal culture-specific traits of disease frequency/severity and healthcare. Though myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are debilitating conditions found all over the world, few studies have examined their characteristics across different countries. T

he purpose of this study was to compare the levels of functional impairment and symptomatology in patients with ME and CFS at tertiary referral hospitals in the US and Spain.

Four hundred twenty potentially eligible participants (N = 235 from the US and N = 185 from Spain) who met the 1994 Fukuda et al. definition for CFS were enrolled. Both samples completed the medical outcomes study 36-item short-form health survey (SF-36) as a proxy for impairment, and the DePaul Symptom Questionnaire (DSQ) for patient symptomatology. ANCOVA and, where appropriate, MANCOVA tests were used to compare the SF-36 and DSQ items for illness characteristics between the samples.

The patients from Spain demonstrated significantly worse functioning than those from the US in the SF-36 domains of physical functioning, bodily pain, general health functioning, role emotional, and mental health functioning. The Spanish sample also was also more symptomatic across all the DSQ-items, most significantly in the pain and neuroendocrine domains.

These findings may be due to differences between the US and Spain regarding disability policy, perception of ME and CFS, and access to specialist care.

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Reduced heart rate variability predicts fatigue severity in individuals with CFS/ME

Reduced heart rate variability predicts fatigue severity in individuals with chronic fatigue syndrome/myalgic encephalomyelitis, by Rosa María Escorihuela, Lluís Capdevila, Juan Ramos Castro, María Cleofé Zaragozà, Sara Maurel, José Alegre & Jesús Castro-Marrero in Journal of Translational Medicine volume 18, Article number: 4 (2020)



Heart rate variability (HRV) is an objective, non-invasive tool to assessing autonomic dysfunction in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). People with CFS/ME tend to have lower HRV; however, in the literature there are only a few previous studies (most of them inconclusive) on their association with illness-related complaints. To address this issue, we assessed the value of different diurnal HRV parameters as potential biomarker in CFS/ME and also investigated the relationship between these HRV indices and self-reported symptoms in individuals with CFS/ME.

In this case–control study, 45 female patients who met the 1994 CDC/Fukuda definition for CFS/ME and 25 age- and gender-matched healthy controls underwent HRV recording-resting state tests. The intervals between consecutive heartbeats (RR) were continuously recorded over three 5-min periods. Time- and frequency-domain analyses were applied to estimate HRV variables. Demographic and clinical features, and self-reported symptom measures were also recorded.

CFS/ME patients showed significantly higher scores in all symptom questionnaires (p < 0.001), decreased RR intervals (p < 0.01), and decreased HRV time- and frequency-domain parameters (p < 0.005), except for the LF/HF ratio than in the healthy controls. Overall, the correlation analysis reached significant associations between the questionnaires scores and HRV time- and frequency-domain measurements (p < 0.05). Furthermore, separate linear regression analyses showed significant relationships between self-reported fatigue symptoms and mean RR (p = 0.005), RMSSD (p = 0.0268) and HFnu indices (p = 0.0067) in CFS/ME patients, but not in healthy controls.

Our findings suggest that ANS dysfunction presenting as increased sympathetic hyperactivity may contribute to fatigue severity in individuals with ME/CFS. Further studies comparing short- and long-term HRV recording and self-reported outcome measures with previous studies in larger CFS/ME cohorts are urgently warranted.

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Recovering from CFS as an intra-active process

Recovering from chronic fatigue syndrome as an intra-active process, by Karen Synne Groven, Tone Dahl-Michelsen in Health Care Women International 12: 1-12, 2019


In this article, we draw on the narrative of a woman who has recovered from chronic fatigue syndrome (CFS) to explore the process of recovering from a debilitating illness.

Inspired by Julia Kristeva’s notion of the body as a complex biocultural fact and by Karen Barad’s posthuman theory (also termed agential realism), we adopt an intra-active approach to the woman’s recovery process, revealing the role played by human as well as nonhuman entities.

In so doing, we move beyond “dualistic,” often polarized debates in the medical literature (and mainstream media) regarding the causes of CFS: debates in which “biological/ physiological” factors tend to be set against “mental/cognitive/psychological” ones. We argue for a medical perspective in which the intra-action of human and nonhuman agents is recognized as contributing to an individual’s recovery process.

Read full chapter

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A neuro-inflammatory model can explain the onset, symptoms and flare-ups of ME/CFS

A neuro-inflammatory model can explain the onset, symptoms and flare-ups of myalgic encephalomyelitis/chronic fatigue syndrome, by Angus Mackay in Journal of Primary Health Care 11(4) 300-307 2019 []



A neuro-inflammatory model is proposed to explain the onset, symptoms and perpetuation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) via characteristic flare-ups (relapses).

In this article, I explore the proposition that a range of triggers (intense physiological stressors such as severe viral infections, chemical toxin exposure or emotional trauma) in ME/CFS-predisposed people causes disruption in the neural circuitry of the hypothalamus (paraventricular nucleus), which induces a neuro-inflammatory reaction in the brain and central nervous system of ME/CFS patients, via over-active innate immune (glial) cells.

Resulting dysfunction of the limbic system, the hypothalamus and consequently of the autonomic nervous system can then account for the diverse range of ME/CFS symptoms. Ongoing stressors feed into a compromised (inflamed) hypothalamus and if a certain (but variable) threshold is exceeded, a flare-up will ensue, inducing further ongoing neuro-inflammation in the central nervous system, thus perpetuating the disease indefinitely.

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Paediatric patients with ME/CFS value understanding & help to move on with their lives

Paediatric patients with myalgic encephalomyelitis/chronic fatigue syndrome value understanding and help to move on with their lives, by Katherine Rowe in Acta Paediatrica, First published: 18 December 2019 []



The aim of this study was to document qualitative questionnaire feedback regarding management from a cohort observational study of young people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Between 1991 and 2009, 784 paediatric patients, age 6‐18 years, were diagnosed with ME/CFS following referral to a specialised clinic at the Royal Children’s Hospital, Melbourne. Over a 14‐year period, feedback was requested on up to seven occasions.

Management included the following: symptom management and a self‐management lifestyle plan that included social, educational, physical and a pleasurable activity outside of home. They adjusted it by severity of illness, stage of education, family circumstances and life interests.

Questionnaires were returned from 626 (80%) with 44% providing feedback more than once. They reported that their management plan allowed them to regain control over their lives. They cited early diagnosis, empathetic, informed physicians, self‐management strategies and educational liaison as helping them to function and remain socially engaged. Ongoing support, particularly assistance to navigate the education system, was essential for general well‐being and ability to cope.

Young people valued regaining the control over their lives that was lost through illness, support to maintain social contacts and assistance to achieve educational and/or life goals.

Key Notes:

  • A cohort observational study of 784 young people with myalgic encephalomyelitis/chronic fatigue syndrome provided feedback across a 14‐year period regarding helpful strategies and ways to improve management.
  • Early diagnosis, empathetic informed physicians, assistance with symptom control, self‐management strategies, educational liaison and advocacy enabled them to regain control, remain socially engaged and function optimally.
  • Doctors and teachers awareness of helpful strategies could significantly reduce distress with this illness.
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The role of low-grade inflammation in ME/CFS – associations with symptoms

The role of low-grade inflammation in ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) – associations with symptoms, by Martin A Jonsjö, Gunnar L Olsson, Rikard K Wicksell, Kjell Alving, Linda Holmström, Anna Andreasson in Psychoneuroendocrinology Vol 113, March 2020, 104578 []



  • Associations between inflammatory markers and common symptoms in ME/CFS.
  • Higher levels of markers were significantly associated with higher levels of symptoms.
  • Biological sex moderated several associations.


Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) often present with a range of flu-like symptoms resembling sickness behavior as well as widespread pain and concentration deficits. The aim of this study was to explore the association between inflammatory markers previously shown to be related to fatigue severity in ME/CFS and common ME/CFS symptoms post-exertional fatigue, impaired cognitive processing, musculoskeletal pain and recurrent flu-like symptoms, and the moderating effect of sex on these associations.

53 adult patients diagnosed with ME/CFS at a specialist clinic were included in the study. Fasting blood plasma was analyzed using the Olink Proseek Multiplex Inflammation panel (β-NGF, CCL11, CXCL1, CXCL10, IL-6, IL-7, IL-8, IL-10, IL-18, TGF-α, TGF-β-1 and SCF) and BioRad Human Cytokine Type 1 assay (TNF-α). Participants rated the average severity of symptoms (0–10) based on the 2011 International Consensus Criteria of ME/CFS during a structured clinical interview. Associations between inflammatory markers and symptom severity were analyzed using bivariate correlations and moderated regression analyses bootstrapped with 5000 repetitions.

Results and conclusions:
Only β-NGF was associated with the fatigue severity measure. However, higher levels of CCL11, CXCL10, IL-7, TNF-α and TGF-β-1 were significantly associated with higher levels of impaired cognitive processing and musculoskeletal pain, and sex was a significant moderator for CXCL10, IL-7 and TGF-β-1. Future studies should investigate the relationship between inflammatory markers and key symptoms in ME/CFS in a longitudinal design in order to explore if and for whom low-grade inflammation may contribute to illness development.

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The All-Party Parliamentary Group on ME to re-convene – Please invite your MP to attend!

ME Association blog post: The All-Party Parliamentary Group on ME to Re-Convene – Please Invite Your MP to Attend! by Dr Charles Shepherd, 9 January 2020



Carol Monaghan MP has decided that the time is right to re-establish the APPG on ME.

Following the election, it was decided to hold an inaugural APPG meeting as soon as possible after members returned to Westminster, and this will now take place on Tuesday 14th January.

Invite Your MP to the Meeting

We now want people to contact their MPs, especially if they are known to be already interested in ME and invite them to attend.

For further information on the time and location of the meeting, your MP can contact Carol Monaghan via House of Commons email/telephone or consult the All-Party Notices.

More info on MEA website

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Perturbation of effector & regulatory T cell subsets in ME/CFS

Perturbation of effector and regulatory T cell subsets in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), by Ece Karhan, Courtney Gunter, Vida Ravanmehr, Meghan Horne, Lina Kozhaya, Stephanie Renzullo, Lindsey Placek, Joshy George, Peter N Robinson, Suzannne D Vernon, Lucinda Bateman, Derya Unutmaz in bioRxiv  2019.12.23. 887505



Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disorder of unknown etiology, and diagnosis of the disease is largely based on clinical symptoms. We hypothesized that immunological disruption is the major driver of this disease and analyzed a large cohort of ME/CFS patient or control blood samples for differences in T cell subset frequencies and functions. We found that the ratio of CD4+ to CD8+ T cells and the proportion of CD8+ effector memory T cells were increased, whereas NK cells were reduced in ME/CFS patients younger than 50 years old compared to a healthy control group.

Remarkably, major differences were observed in Th1, Th2, Th17 and mucosal-associated invariant T (MAIT) T cell subset functions across all ages of patients compared to healthy subjects. While CCR6+ Th17 cells in ME/CFS secreted less IL-17 compared to controls, their overall frequency was higher. Similarly, MAIT cells from patients secreted lower IFNgamma;, GranzymeA and IL-17 upon activation. Together, these findings suggest chronic stimulation of these T cell populations in ME/CFS patients.

In contrast, the frequency of regulatory T cells (Tregs), which control excessive immune activation, was higher in ME/CFS patients. Finally, using a machine learning algorithm called random forest, we determined that the set of T cell parameters analyzed could identify more than 90% of the subjects in the ME/CFS cohort as patients (93% true positive rate or sensitivity).

In conclusion, these multiple and major perturbations or dysfunctions in T cell subsets in ME/CFS patients suggest potential chronic infections or microbiome dysbiosis.

These findings also have implications for development of ME/CFS specific immune biomarkers and reveal potential targets for novel therapeutic interventions.


Press release: JAX Research on Immune Profiles in ME/CFS is now Available Online, 27 Dec 2019

…In this detailed study, we analyzed the immunological differences between ME/CFS patients and healthy controls within a large cohort and found several major differences in T cell subset frequencies and functions between the two groups.

… the ratio of two major subsets of T cells, namely the CD4+ to CD8+ T cell ratio, was increased in ME/CFS patients compared to healthy controls.

… There was also a major difference seen between healthy controls and ME/CFS patients in the Th17 cell subset, which is involved in responding to bacteria and is also a culprit in several autoimmune and chronic inflammatory conditions… we think this suggests a chronic activation of Th17 cells in ME/CFS which induces an ‘exhausted’ state where the cells are more dysfunctional due to their chronic stimulation.

…There was also a major difference seen in the mucosal-associated invariant T (MAIT) cells in ME/CFS patients compared to healthy controls…  It is possible that these changes in Th17 and MAIT cells are associated with differences in the composition of the microbiota of the ME/CFS patients, and that a disruption in the microbiota causes chronic activation of these subsets and an exhausted state in ME/CFS patients.

Interestingly, we also noted that regulatory T cells (Tregs) were increased in ME/CFS patients compared to controls. Tregs function to suppress excessive chronic immune responses, so this is consistent with our finding that there appears to be chronic activation of major T cell subsets in ME/CFS patients.

Finally and importantly, we utilized these immune profiling parameters in a machine learning classifier and were able to correctly identify ME/CFS patients from healthy controls with high sensitivity and accuracy. As patients often wait years to receive an ME/CFS diagnosis since there are currently no clear diagnostic tools to identify the disease, the development of an immune profile classier could aid as a biomarker to diagnose the disease.

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Autonomic markers, CFS & post-exertion states

Autonomic markers, chronic fatigue syndrome, and post-exertion states, by Fred Friedberg in Journal of Psychosomatic Research Vol 127, Dec 2019, []


Article extracts:

A large body of evidence suggests that autonomic imbalance, i.e., hyperactive sympathetic nervous system and hypoactive parasympathetic nervous system, is associated with a number of pathological conditions and diseases, and may be a final common pathway to increased morbidity and mortality [1].

Heart rate variability (HRV), a measure of inter-beat interval fluctuations and more broadly of parasympathetic (vagal) activity has been successfully used to index autonomic imbalances.

…In conclusion, reduced HRV may be a sensitive (and conveniently assessed) autonomic indicator of post-exertional worsening and a correlate of activity and fatigue that may differentiate CFS from healthy controls. If negative changes in HRV are uniquely associated with greater PEM and day-to-day illness fluctuations in CFS, then its potential as an illness marker can be productively tested in exertional challenge designs that amplify PEM-related symptom exacerbations.

Read full paper

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Patients with ME/CFS & chronic pain report similar level of sickness behavior as individuals injected with bacterial endotoxin at peak inflammation

Patients with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and chronic pain report similar level of sickness behavior as individuals injected with bacterial endotoxin at peak inflammation, by Martin A Jonsjö, Jenny Åström, Michael P Jones, Bianka Karshikoff, KarinLodin, Linda Holmström, Lars Agréus, Rikard K Wicksell, John Axelsson, Mats Lekander, Gunnar L Olsson, Mike Kemani, Anna Andreasson in Brain, Behavior, & Immunity – Health 17 December 2019 []



  • Investigation of the level of subjective sickness behavior, assessed with a validated questionnaire, in patients with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and in patients with chronic pain compared to clinical, non-clinical and experimental groups.
  • The level of sickness behavior is similarly high in ME/CFS and chronic pain, and equal to the level in experimentally induced inflammation via injection of bacterial endotoxin.
  • Higher levels of sickness behavior showed significant associations with lower levels of self-rated health and functioning.


Chronic sickness behavior is implicated in ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and chronic pain but the level of subjective sickness behavior in these conditions has not been investigated or compared to other clinical and non-clinical samples, or to the level in experimental inflammation. Furthermore, the relationship between sickness behavior and self-rated health and functioning is not known in patients with ME/CFS and chronic pain.

The aim of the present study was to investigate how sickness behavior in patients with chronic conditions differs from that in individuals with experimental acute sickness, primary care patients, the general population and healthy subjects. In addition, we wanted to explore how sickness behavior is related to self-rated health and health-related functioning.

Sickness behavior was quantified using the sickness questionnaire (SicknessQ). Self-ratings were collected at one time-point in 6 different samples. Levels of sickness behavior in patients with ME/CFS (n ​= ​38) and patients with chronic pain (n ​= ​190) were compared to healthy subjects with lipopolysaccharide(LPS)-induced inflammation (n ​= ​29), primary care patients (n ​= ​163), individuals from the general population (n ​= ​155) and healthy subjects (n ​= ​48), using linear regression. Correlations and moderated regression analyses were used to investigate associations between sickness behavior and self-rated health and health-related functioning in ME/CFS, chronic pain and the general population.

LPS-injected individuals (M ​= ​16.3), patients with ME/CFS (M ​= ​16.1), chronic pain (M ​= ​16.1) and primary care patients (M ​= ​10.7) reported significantly higher SicknessQ scores than individuals from the general population (M ​= ​5.4) and healthy subjects (M ​= ​3.6) all p’s ​< ​0.001). In turn, LPS-injected individuals, patients with ME/CFS and chronic pain reported significantly higher SicknessQ scores than primary care patients (p’s ​< ​0.01). Higher levels of sickness behavior were associated with poorer self-rated health and health-related functioning (p’s ​< ​0.01), but less so in patients with ME/CFS and chronic pain than in individuals from the general population.

Patients with ME/CFS and chronic pain report similar high levels of sickness behavior; higher than primary care patients, and comparable to levels in experimental inflammation. Further study of sickness behavior in ME/CFS and chronic pain populations is warranted as immune-to-brain interactions and sickness behavior may be of importance for functioning as well as in core pathophysiological processes in subsets of patients.

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