Research: Endothelial cell function in Post-COVID-19 patients, with & without ME/CFS

Posted on 08/27/2022 by wames

Serum of Post-COVID-19 Syndrome patients with or without ME/CFS differentially affects endothelial cell function in vitro

 

The endothelium is a thin membrane that lines the inside of the heart and blood vessels. Endothelial cells release substances that control vascular relaxation and contraction as well as enzymes that control blood clotting, immune function and platelet (a colorless substance in the blood) adhesion. [Cedars Sinai]

Key points:

  • the study was done in vitro i.e. outside the body, often in a test tube
  • 3 groups of patients’ blood serum was studied
  • both similarities and differences were found in the 2 groups of Post COVID patients (with and without ME/CFS)
  • anti-endothelial cell autoantibodies (AECAs) binding to Endothelial cells was significantly increased in Post COVID patients with ME/CFS.
  • both differed from healthy controls

Research abstract

Recently, endothelial dysfunction (ED) has been demonstrated in these patients, but the mechanisms remain elusive.

Therefore, we investigated the effects of patients’ sera on endothelia cells (ECs) in vitro. PCS (n = 17), PCS/CFS (n = 13), and healthy controls (HC, n = 14) were screened for serum anti-endothelial cell autoantibodies (AECAs) and dysregulated cytokines.

Serum-treated ECs were analysed for the induction of activation markers and the release of small molecules by flow cytometry. Moreover, the angiogenic potential of sera was measured in a tube formation assay.

While only marginal differences between patient groups were observed for serum cytokines, AECA binding to ECs was significantly increased in PCS/CFS patients.

Surprisingly, PCS and PCS/CFS sera reduced surface levels of several EC activation markers. PCS sera enhanced the release of molecules associated with vascular remodelling and significantly promoted angiogenesis in vitro compared to the PCS/CFS and HC groups.

Angiogenesis – The formation and development of new blood vessels [Wiktionary]

Additionally, sera from both patient cohorts induced the release of molecules involved in inhibition of nitric oxide-mediated endothelial relaxation.

Overall, PCS and PCS/CFS patients′ sera differed in their AECA content and their functional effects on ECs, i.e., secretion profiles and angiogenic potential. We hypothesise a pro-angiogenic effect of PCS sera as a compensatory mechanism to ED which is absent in PCS/CFS patients.

Excerpt from paper:

Based on our observations we speculate on serum factors playing a role in compensatory responses to ED and hypoperfusion in PCS, but not or insufficiently in PCS/CFS patients. Our results may thus provide a new perspective on ME/CFS chronicity which should be further examined.

Authors: Lavinia Flaskamp;  Constanze Roubal; Steven Uddin; Franziska Sotzny; Claudia Kedor; Sandra Bauer; Carmen Scheibenbogen; Martina Seifert

Publication: Cells. 2022; 11(15):2376 [doi.org/10.3390/cells11152376] 2 August

Dr Katrina Pears comments 

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#WAMES_800 Fundraising Journey – 2nd £100 target reached!

Posted on 08/25/2022 by wames

#WAMES_800 Fundraising Journey climbs another step towards our goal

 

Slowly but surely we have taken another step towards reaching our target of £800 to fund next year’s WAMES activities.

The £200 milestone has been reached, only £600 to go!

Every little helps

The second milestone has been reached by the sale of hand made cards and an increase in donations from online shopping. Each shop might raise anything from 25p for a weekly supermarket shop to £5+ a time on a big purchase, but it all adds up. Many thanks to all who have joined us on our fundraising journey. Why not invite others to join us!

 

Find out more about our Fundraising Journey:

#WAMES_800 fundraising journey – Join us! 

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 – How can I donate?

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Treatment research: Oxaloacetate treatment for ME/CFS & Long-COVID

Posted on 08/23/2022 by wames

Oxaloacetate Treatment For Mental And Physical Fatigue In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long-COVID fatigue patients: a non-randomized controlled clinical trial

 

Research abstract:

Key points:

  • 6 weeks of treatment led to reduction of fatigue in Long COVID patients by up to 46.8%
  • 6 weeks of treatment led to reduction of fatigue in ME/CFS patients by an average of 22.5% to 33%
  • Uses Chalder Scale to measure fatigue, which is accused of having operational flaws for ME/CFS
  • Compares results to control subjects from a previous study
  • Not possible to buy the supplement at the same dosage researched
  • Researchers say this is worth further study. Others say these results don’t support that.

Background
There is no approved pharmaceutical intervention for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Fatigue in these patients can last for decades. Long COVID may continue to ME/CFS, and currently, it is estimated that up to 20 million Americans have significant symptoms after COVID, and the most common symptom is fatigue.

Anhydrous Enol-Oxaloacetate, (AEO) a nutritional supplement, has been anecdotally reported to relieve physical and mental fatigue and is diminished in ME/CFS patients. Here, we examine the use of higher dosage AEO as a medical food to relieve pathological fatigue.

Methods

ME/CFS and Long-COVID patients were enrolled in an open label dose escalating “Proof of Concept” non-randomized controlled clinical trial with 500 mg AEO capsules. Control was provided by a historical ME/CFS fatigue trial [i.e. not done at the same time] and supporting meta-analysis study, which showed average improvement with oral placebo using the Chalder Scale of 5.9% improvement from baseline.

At baseline, 73.7% of the ME/CFS patients were women, average age was 47 and length of ME/CFS from diagnosis was 8.9 years. The Long-COVID patients were a random group that responded to social media advertising (Face Book) with symptoms for at least 6 months. ME/CFS patients were given separate doses of 500 mg BID (N = 23), 1,000 mg BID (N = 29) and 1000 mg TID (N = 24) AEO for six weeks.

Long COVID patients were given 500 mg AEO BID (N = 22) and 1000 mg AEO (N = 21), again over a six-week period. The main outcome measure was to compare baseline scoring with results at 6 weeks with the Chalder Fatigue Score (Likert Scoring) versus historical placebo. The hypothesis being tested was formulated prior to data collection.

Results

76 ME/CFS patients (73.7% women, median age of 47) showed an average reduction in fatigue at 6 weeks as measured by the “Chalder Fatigue Questionnaire” of 22.5% to 27.9% from baseline (P < 0.005) (Likert scoring). Both physical and mental fatigue were significantly improved over baseline and historical placebo. Fatigue amelioration in ME/CFS patients increased in a dose dependent manner from 21.7% for 500 mg BID to 27.6% for 1000 mg Oxaloacetate BID to 33.3% for 1000 mg TID. Long COVID patients’ fatigue was significantly reduced by up to 46.8% in 6-weeks.

Conclusions

Significant reductions in physical and metal fatigue for ME/CFS and Long-COVID patients were seen after 6 weeks of treatment. As there has been little progress in providing fatigue relief for the millions of ME/CFS and Long COVID patients, anhydrous enol oxaloacetate may bridge this important medical need. Further study of oxaloacetate supplementation for the treatment of ME/CFS and Long COVID is warranted.

Authors & journal:

Alan Cash &  David Lyons Kaufman in Journal of Translational Medicine volume 20, Article number: 295 (2022); publsished 28 June 2022 [doi.org/10.1186/s12967-022-03488-3]

Comments:

S4ME comment: Claims made for efficacy based on the Chalder Fatigue questionnaire were not supported by any significant improvement on the Fatigue Severity Scale, and the data used as the placebo comparator for this 6 week open label trial was from an unrelated trial over 26 weeks.

PR News Wire: New Study: Oxaloacetate Reduces Chronic Fatigue In Just Six Weeks, Promising Data for ME/CFS Patients

Currently, oxaloacetate is available over-the-counter in smaller doses as a nutritional supplement from several national brands. To obtain oxaloacetate at the doses present in this study, patients will need to utilize the medical food Oxaloacetate CFS under the supervision of a licensed healthcare provider.

Current trial (Bateman Horne Center): Medical Food – Anhydrous Enol-Oxaloacetate for Fatigue

Health rising: Oxaloacetate: the Best Mitochondrial Supplement for ME/CFS (and Long COVID?) [2021]

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Research: Impaired TRPM3 ion channel function found in ME/CFS & Long COVID

Posted on 08/20/2022 by wames

TRPM3 dysfunction in post COVID-19 condition and ME/CFS patients

 

Research from the NCNED in Australia, using their Electrophysiology ‘Patch Clamp’ technique, concludes:

The results of this investigation suggest that post COVID-19 condition patients may have impaired TRPM3 ion channel function and provide further evidence regarding the similarities between post COVID-19 condition and ME/CFS.

Impaired TRPM3 channel activity in post COVID-19 condition patients suggest impaired ion mobilisation which may consequently impede cell function resulting in chronic post-infectious symptoms.

Further investigation into TRPM3 function may elucidate the pathomechanism, provide a diagnostic and therapeutic target for post COVID-19 condition patients and commonalities with ME/CFS patients.

 

Research abstract: 

Background:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe multisystemic condition associated with post-infectious onset, impaired natural killer (NK) cell cytotoxicity and impaired ion channel function, namely Transient Receptor Potential Melastatin 3 (TRPM3). Long-term effects of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) virus has resulted in neurocognitive, immunological, gastrointestinal, and cardiovascular manifestations recently recognised as post coronavirus disease 2019 (COVID-19) condition. The symptomatology of ME/CFS overlaps significantly with post COVID-19; therefore, this research aimed to investigate TRPM3 ion channel function in post COVID-19 condition patients.

Methods:

Whole-cell patch-clamp technique was used to measure TRPM3 ion channel activity in isolated NK cells of N = 5 ME/CFS patients, N = 5 post COVID-19 patients, and N = 5 healthy controls (HC). The TRPM3 agonist, pregnenolone sulfate (PregS) was used to activate TRPM3 function, while ononetin was used as a TRPM3 antagonist.

Results:

As reported in previous research, PregS-induced TRPM3 currents were significantly reduced in ME/CFS patients compared with HC (p = 0.0048). PregS-induced TRPM3 amplitude was significantly reduced in post COVID-19 condition compared with HC (p = 0.0039).

Importantly, no significant difference was reported in ME/CFS patients compared with post COVID-19 condition as PregS-induced TRPM3 currents of post COVID-19 condition patients were similar of ME/CFS patients currents (p > 0.9999). Isolated NK cells from post COVID-19 condition and ME/CFS patients were resistant to ononetin and differed significantly with HC (p < 0.0001).

Conclusion:

The results of this investigation suggest that post COVID-19 condition patients may have impaired TRPM3 ion channel function and provide further evidence regarding the similarities between post COVID-19 condition and ME/CFS. Impaired TRPM3 channel activity in post COVID-19 condition patients suggest impaired ion mobilisation which may consequently impede cell function resulting in chronic post-infectious symptoms. Further investigation into TRPM3 function may elucidate the pathomechanism, provide a diagnostic and therapeutic target for post COVID-19 condition patients and commonalities with ME/CFS patients.

 

Read full paper:

Transient receptor potential melastatin 3 dysfunction in post COVID-19 condition and myalgic encephalomyelitis/chronic fatigue syndrome patients, by Etianne Martini Sasso, Katsuhiko Muraki, Natalie Eaton-Fitch, Peter Smith, Olivia Ly Lesslar, Gary Deed & Sonya Marshall-Gradisnik in Molecular Medicine volume 28, Article number: 98 (2022)

Comment from NCNED: World first chronic fatigue syndrome findings could fast track response to Long COVID

“Our researchers have pioneered a specialised technique known as electrophysiology or ‘patch-clamp’ in immune cells. This technique previously led the team to report on the pathology of ME/CFS and to examine specific ion channels in cells.”

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Delivery Plan on ME/CFS for England

Posted on 08/19/2022 by wames

DHSC Delivery Plan on ME/CFS development strategy

 

The Department for Health & Social Care (DHSC) in England has laid out the way they intend to develop the “cross-Government Delivery Plan on ME/CFS for England”, which their Health Secretary announced in May 2022.

In a communication to stakeholders on 17th August, the DHSC outlines the governance structure which has been in operation since June.

The members of the Delivery Plan Task &  group include all the co-chairs of the working groups, ME/CFS specialists, senior DHSC and cross government departmental officials, representatives from NICE, NHS England and three ME/CFS charity/ organisation representatives nominated by Forward ME.

The Scottish, Welsh and Northern Ireland Governments are also represented.

The document describes how the working group memberships have been selected and gives information about proposed timescale.

Timescales for the work

  • The Working Groups have been meeting regularly from June 2022 to discuss current problems, a vision for the future and proposals for action. These will be developed into a draft Delivery Plan.
  • We intend to release the draft Delivery Plan later this year – 2022 – to support wider engagement on the plan and proposals for action.
  • Everyone will have an opportunity to share their experience and give their views on the draft Delivery Plan at this point.
  • All the evidence will be taken into account before the final Delivery Plan is published next year – 2023.

See also:

ME/CFS Research Priorities Report 2022 welcomed by UK Government 

Rethinking ME: a report by the All-Party Parliamentary Group on Myalgic Encephalomyelitis

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Research review & analysis: Repeated VO2 max exercise tests in ME/CFS

Posted on 08/18/2022 by wames

Repeated maximal exercise tests of peak oxygen consumption in people with myalgic encephalomyelitis/ chronic fatigue syndrome: a systematic review and meta-analysis, John Derek Franklin, Michael Graham in Fatigue: Biomedicine, Health & Behavior 16 Aug 2022

 

Key points:

  • The techniques of synthesis and meta analysis were used to extract more information from existing exercise studies in ME/CFS.
  • Evidence of limited aerobic capacity was noticed in the 24 hours following high-intensity exercise in ME/CFS, but not for controls, identified by a repeat exercise test.
  • It would be useful to explore the lowest demand needed to illicit this response and assess the feasibility of repeated exercise at lower intensities.
  • These findings add support to the hypothesis of a possible physiological mechanism associated with ME/CFS.

Research review abstract:

Background:

Repeated maximal exercise separated by 24 hours may be useful in identifying possible objective markers in people with ME/CFS that are not present in healthy controls.

Aim:

We aimed to synthesise studies in which the test-to-retest (24 hours) changes in VO2 and work rate have been compared between people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and controls.

Research synthesis – It aims to generate new knowledge by combining and comparing the results of multiple studies on a given topic [Wikipedia]

Methods:

Seven databases (CINAHL, PubMed, PsycINFO, Web of Knowledge, Embase, Scopus and MEDLINE) were searched. Included studies were observational studies that assessed adults over the age of 18 years with a clinical diagnosis of ME/CFS compared to healthy controls. The methodological quality of included studies was assessed using the Systematic Appraisal of Quality for Observational Research critical appraisal framework. Data from included studies were synthesised using a random effects meta-analysis.

Results:

The pooled mean decrease in peak work rate (five studies), measured at retest, was greater in ME/CFS by −8.55 (95% CI −15.38 to -1.72) W. The pooled mean decrease in work rate at anaerobic threshold (four studies) measured at retest was greater in ME/CFS by −21 (95%CI −38 to −4, tau=9.8) W. The likelihood that a future study in a similar setting would report a difference in work rate at anaerobic threshold which would exceed a minimal clinically important difference (10 W) is 78% (95% CI 40%-91%).

Conclusion:

Synthesised data indicate that people with ME/CFS demonstrate a clinically significant test-retest reduction in work rate at the anaerobic threshold when compared to apparently healthy controls.

Comment by Dr Katrina Pearson

 

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Research review: ME/CFS & pregnancy

Posted on 08/15/2022 by wames

ME/CFS and pregnancy

 

A review of the research into ME/CFS in pregnancy by a team from Newcastle University concluded that:

Current evidence on ME/CFS in pregnancy is limited, and findings are inconsistent. Studies are limited by small sample size and currently, there is no UK evidence. More high-quality research into ME/CFS and pregnancy is urgently needed to support the development of evidence-based guidelines on ME/CFS and pregnancy.

Myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review, by Mark Pearce, Emma Slack, Katrina Pears, Julia Newton, Judith Rankin in Journal of Epidemiology & Community Health Vol 76, #Suppl 1 August 2022

Research abstract

Background:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a fluctuating complex condition. More common in women than men, it tends to develop between mid-20s and mid-40s, including the main childbearing age (15-45 years).

There are currently no systematic reviews summarising evidence relating to ME/CFS and pregnancy. The lack of quality assessed, and systematic summary evidence makes it harder for people with ME/CFS to make informed decisions about pregnancy, and harder for health care professionals to offer evidence-based care.

This mixed methods systematic review aims to examine and summarise existing evidence relating to ME/CFS and pregnancy, both in relation to pregnancy outcomes and experiences of pregnancy but also the effect of pregnancy on ME/CFS severity and symptoms.

Methods:

This review followed a convergent segregated design. Seven electronic databases, relevant grey literature, reference lists of relevant reviews, and reference lists and citations of all included studies, were searched. Where necessary, authors were contacted for additional information. Studies of any design published in English, reporting on ME/CFS and pregnancy/postpartum (up to two years), risk of pregnancy outcomes with ME/CFS, or experiences during pregnancy for mother, partner or health and social care professionals following pregnancy with ME/CFS were included.

Three researchers performed screening, data extraction and quality assessments independently. Qualitative and quantitative literature was analysed separately using thematic and descriptive syntheses, respectively (meta-analysis was not appropriate). Findings were integrated through configuration.

Results:

Searches identified n=2,789 studies, n=10 met our inclusion criteria. There were five quantitative studies, two qualitative studies and three pieces of grey literature. Preliminary results suggest that evidence is conflicting. In the qualitative literature, one study suggested one participant thought pregnancy improved ME/CFS symptoms while the other noted a participant commented that ME/CFS may have adversely affected her pregnancy. Of the four quantitative studies that reported on ME severity during pregnancy, two suggested pregnancy negatively impacted on ME/CFS, one study found most women had no change in ME/CFS symptoms during pregnancy, and one found ME/CFS improved during pregnancy. Only one study reported on pregnancy outcomes, finding a higher rate of spontaneous abortions, and increased developmental and learning delays in infants born to mothers with ME/CFS.

Conclusion:

Current evidence on ME/CFS in pregnancy is limited, and findings are inconsistent. Studies are limited by small sample size and currently, there is no UK evidence. More high-quality research into ME/CFS and pregnancy is urgently needed to support the development of evidence-based guidelines on ME/CFS and pregnancy.

 

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Research: Characteristics of immune cells of ME/CFS

Posted on 08/15/2022 by wames

Phenotypic characteristics of peripheral immune cells of Myalgic encephalomyelitis/ chronic fatigue syndrome via transmission electron microscopy: A pilot study from Stanford University

 

Research paper conclusion:

In summary, only a handful of studies have been performed on the ultrastructural characteristics of ME/CFS muscle cells and no data are available on other cell types. Our study analyzes immune cells from ME/CFS patients for the first time and provides insights into disruption into immune cell structure and function.

Immune cell – A cell that is part of the immune system and helps the body fight infections and other diseases.

Although our sample size is small this study suggests new directions for characterization of morphological and ultrastructural dysregulation of affected tissues at single cell level. Our finding that the proportion of apoptosis and necrosis increase in stimulated T cells in patients with ME/CFS and that the rate of mitochondrial swelling correlates with disease severity is robust and supports previous research but needs well-adjusted replication.

Elevated lipid droplet and platelet hyperactivation in the extremely severely ill ME/CFS patient highlights the roles genetics and epigenetics risk factors interplay in the onset, severity, prognosis, and comorbidity. It further reveals the power of genetics testing when combined with proper functional, diagnostic and research testing in patients with chronic complex conditions.

Replicating this study with larger cohorts, more measurement time points, and perhaps a combination of other cell death assays would expand our knowledge of morphological characteristics of the immune cell in ME/CFS etiopathogenesis.

 

Authors:

Fereshteh Jahanbani, Rajan D Maynard, Justin Cyril Sing, Shaghayegh Jahanbani, John J Perrino, Damek V Spacek, Ronald W Davis, Michael P Snyder in PLoS One Vol 19, #8, p e0272703 August 9, 2022

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic multi-systemic disease characterized by extreme fatigue that is not improved by rest, and worsens after exertion, whether physical or mental. Previous studies have shown ME/CFS-associated alterations in the immune system and mitochondria. We used transmission electron microscopy (TEM) to investigate the morphology and ultrastructure of unstimulated and stimulated ME/CFS immune cells and their intracellular organelles, including mitochondria.

Method:

PBMCs from four participants were studied: a pair of identical twins discordant for moderate ME/CFS, as well as two age- and gender- matched unrelated subjects-one with an extremely severe form of ME/CFS and the other healthy.

Results:

TEM analysis of CD3/CD28-stimulated T cells suggested a significant increase in the levels of apoptotic and necrotic cell death in T cells from ME/CFS patients (over 2-fold). Stimulated Tcells of ME/CFS patients also had higher numbers of swollen mitochondria.

We also found a large increase in intracellular giant lipid droplet-like organelles in the stimulated PBMCs from the extremely severe ME/CFS patient potentially indicative of a lipid storage disorder.

Lastly, we observed a slight increase in platelet aggregation in stimulated cells, suggestive of a possible role of platelet activity in ME/CFS pathophysiology and disease severity.

Conclusion:

These results indicate extensive morphological alterations in the cellular and mitochondrial phenotypes of ME/CFS patients’ immune cells and suggest new insights into ME/CFS biology.

Read full paper

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Powys Health Board defends their ME/CFS services

Posted on 08/12/2022 by wames

Powys Health Board say they are committed to using NICE guidance

 

WAMES has been asking Health Boards in Wales what plans they have to implement the new NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME. 

Powys training Health Board’s Chief Executive, Carol Shillabeer, explains their approach to ME/CFS and invites people to raise concerns and give feedback:

 

“Your email suggests that Powys Teaching Health Board (PTHB) is not following NICE guidance for ME/CFS. I would wish to assure you that we are committed to using NICE guidance and as far as is practicable, ensure our services operate in line with the guidance. You may be aware that the health board has the longest established and most developed ME/CFS service in Wales.

Our ME/CFS services are delivered by the Powys Living Well Service. The service encompasses support for a range of long-term health conditions and allows us to agree a tailored management plan with each person referred to the Service that addresses their specific needs. The service takes a Shared Decision-Making Approach, which ensures individuals are always involved in all decisions about their support.

The service lead has discussed your email with Dr Richard Stratton, Assistant Medical Director who is the primary contact between the Health Board and GPs in Powys. We were concerned that you feel GPs are insufficiently knowledgeable about CFS/ME. It would be especially helpful if you have any specific examples of where any resident of Powys has not been treated according to the NICE guidance and would encourage you to ask any individual to raise the concern with the practice concerned. We would be happy to facilitate this process if that would be helpful.

Referral process

Powys residents living with suspected ME/CFS are initially assessed by their GP before being referred to the Powys Living Well Service, to ensure any other medical conditions are ruled out and/or investigated. When the referral is initially received, if the investigations which are recommended in the NICE guidance have not been completed the GP will be asked to complete them before the referral is accepted by the service.

Powys includes Radnorshire, Montgomeryshire, Brecknock

Initial consultation

Everyone referred to the service is offered an initial consultation. The aim of this consultation is to agree a management plan which addresses each individual’s needs and typically encompasses interventions provided by the service as well as signposting to other public and third sector resources available to them and their supporting family and friends.

Interventions

The service offers the following interventions:

  • Cognitive behavioural therapy
  • Acceptance and commitment therapy
  • Health coaching
  • Activity management
  • Pain management
  • Dietary management
  • Sleep management
  • Management of symptom exacerbation

These interventions are delivered both individually and in groups. We offer people a choice of face-to-face appointments or appointments via Microsoft Teams.  We do not advocate (nor have we ever advocated) Graded Exercise Therapy as defined in
1.11.14 Box 4 of the NICE guidance but we do work with people to improve their exercise and activity tolerance if this is something they identify as being important to them.

“The residential programme is suitable for people with a wide range of conditions including; fibromyalgia, chronic fatigue syndrome, myalgic encephalopathy, post-viral fatigue syndrome (including post-covid syndrome) , complex regional pain syndrome and myofacial pain syndrome. The programme incorporates cognitive behavioural therapy (CBT), acceptance and commitment therapy, graded exercise, activity management and mindfulness.” (Powys living well service)

Clinical Team

The Powys Living Well Service includes the following registered professionals: psychologists, physiotherapists, nurse, occupational therapist, dietician, and GP. They are supported by a team of assistant practitioners, digital facilitators, and administrators.

Experience panel

This is a panel that sits monthly and anyone referred to the service is invited to discuss service improvements. All changes to the service are discussed with this panel before being implemented. We also seek feedback from people at various stages of their journey through the service. To date we have not received any feedback either directly, or indirectly through our concerns team, that would suggest that the issues raised in your email reflect the experience of the people using the service here in Powys.

I trust this information about the service we provide is helpful.”

WAMES would like to hear from anyone who has accessed healthcare for ME/CFS in Powys, particularly in the last 5 years. Do GPs understand ME?  Has the Health Board provided services that you need? Have you been offered a ‘tailored management plan’? Is there support for the housebound?

We want to hear about the successes and the failures, so we can continue to work for service improvement.  #ImplementNICEmecfs

Contact jan@wames.org.uk

Read what other Health Boards say: Aneurin Bevan; Betsi Cadwaladr; Cardiff; Cwm Taf; Swansea Bay.

 

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Severe ME Day gallery 2022

Posted on 08/08/2022 by wames
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