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

Posted in News | Tagged , , , , , , , , , | 1 Comment

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

 

Posted in News | Tagged , , , , , , | Comments Off on Research review & analysis: Repeated VO2 max exercise tests in ME/CFS

Survey: NHS Wales wants to hear from women

Posted on 08/18/2022 by wames

Women in Wales survey 2022

 

Judith Paget, Chief Executive of NHS Wales asks women in Wales:  tell us what is important to you, your life, your health and your family

Fifty one percent (51%) of our population in Wales are women.

We in NHS Wales want to reduce inequalities and for our services to reflect our community. The Welsh Government recently published a Quality Statement on women’s health which sets out what the NHS is expected to deliver to ensure good quality health services to support women and girls through the course of their lives. [Read what it says about ME/CFS]

We need you, as women in Wales, to tell us what is important to you, your life, your health and that of your family.

We have produced a short survey that asks about your health, your life, your wellbeing, your experiences and we want you to tell us what we, as NHS Wales, can do to better support you. Through a better understanding of your needs and experiences, we can ensure NHS Wales offers the provision you need and help to make the right choices with you and for you.

This questionnaire is for women, girls over the age of 16 and those registered female at birth.

We have looked to keep the survey concise and the questions cover aspects of the life course of a woman – a life course approach to health aims to ensure people’s wellbeing at all ages, by addressing people’s needs throughout their life time.

Your feedback is important to us and we will review all of the responses. Thank you for your time.

Take the survey             Closing date: 12 September 2022

 

Posted in News | Tagged , , , | Comments Off on Survey: NHS Wales wants to hear from women

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.

 

Posted in News | Tagged , , , , , | Comments Off on Research review: ME/CFS & pregnancy

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

Posted in News | Tagged , , , , , , , , , , , , , | Comments Off on Research: Characteristics of immune cells of ME/CFS

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.

 

Posted in News | Tagged , , , , | 6 Comments

Severe ME Day gallery 2022

Posted on 08/08/2022 by wames
Posted in News | Tagged | Comments Off on Severe ME Day gallery 2022

Severe ME Day August 8th 2022 – Brain Fog

Posted on 08/07/2022 by wames

Severe ME Day 2022

 

Every year we take time on August 8th to remember everyone who is suffering from, or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.

 

This year we join with people around the world to highlight ‘brain fog’, a problem all people with ME can experience, but which is particularly disabling for those who are severely affected.

Brain fog – a type of cognitive impairment – manifests as impaired working memory and concentration accompanied by difficulty processing complex information. [ME pedia]

 

“Whatever you call it, I just feel stupid. Why can’t I remember how to brush my teeth? Why can’t I explain to my carers how I feel? Why have I forgotten what you have said, 2 minutes after you speak? In the fog I just have to hold on to hope, as I wait for more lucid moments.”      (Mary)

Severe ME – key points

Posted in News | Tagged , | Comments Off on Severe ME Day August 8th 2022 – Brain Fog

Sign up for regular news from WAMES

Posted on 08/05/2022 by wames

WAMES e-news

 

Sign up for the latest news from WAMES, straight to your inbox. Read about:

  • the activities of WAMES
  • what is happening in Wales of interest to people with ME & chronic illness
  • ways to get involved and influence ME research, health & social care in Wales, welfare reform, disability issues, carers issues etc.

You can also continue to read about key news from around the world on our blog and social media.

E-news sign up                   Read past e-news

 

 

Posted in News | Comments Off on Sign up for regular news from WAMES

WAMES & the WMEA warn against the Lightning Process

Posted on 08/03/2022 by wames

The Lightning Process: A Position Paper from the World ME Alliance

 

The World ME Alliance and its members do not endorse the Lightning Process for people with Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS).

 

The World ME Alliance (WMEA) has taken the unusual step of publishing a position paper on the Lightning Process (LP), which is a psychological training programme created by Phil Parker and that has been promoted to ME and CFS patients as a cure. It gets its name because it is supposed to cure in 3 days.

WAMES is a founding member of the Alliance and has signed up to the statement in support of members in countries where the Lightning Process is currently being vigorously promoted. In the UK in 2012 the British Standards Authority ruled that Phil Parker Ltd was advertising the LP as a cure for ME without evidence. LP’s influence in the UK continues, but without the impetus prior to 2012.

The short Statement makes the following points about LP:

  • there is no evidence to support its claims
  • it encourages participants to be secretive about the process
  • it ignores PEM so can cause harm to patients
  • there is little follow-up by practitioners
  • it is costly and can leave participants in financial difficulty
  • there is a void in alternative treatment options

People with ME deserve evidence-based healthcare and research into the causes and treatment of their disease.

Read or Download the paper

Posted in News | Tagged , , | Comments Off on WAMES & the WMEA warn against the Lightning Process