The challenges for WAMES in 2019

Posted on 03/20/2019 by wames

WAMES is looking back and looking forward

2018 was a challenging year for WAMES due to an increase in campaigning opportunities and reduced funding.

To add to the challenge, our team of volunteers faced added responsibilities and setbacks, which reduced the number of hours they were able to give to WAMES.  Forget about problems coming in 3s. Sometimes it felt more like 33s!

In spite of that we are relieved to say we were able to achieve many of our goals including:

  • representing Welsh pwme at the NICE scoping meeting
  • getting the Health Minister’s understanding and support for improving GP training
  • representing pwme at the Welsh Government’s All Wales Implementation group (AWIG) for ME/CFS
  • telling AMs in the Senedd about their Health Boards’ delay in implementing the Task & Finish Group recommendations and the need for informed GPs to diagnose & advise patients

Going forward we will have to make some hard decisions i.e. reduce the range of our activities so we can continue to work effectively for ME in Wales.

Our 2019 priorities will be:

  1.  Health campaign – our focus will be on raising awareness in the NHS and looking for ways to improve GP understanding of ME & CFS including:
    • working with Health Board reps on the All Wales Implementation Group (AWIG) to develop pathways and patient information, and encourage services
    • producing awareness articles for the Royal College of General Practitioners (RCGP)Welsh newsletter and other professional organisations
    • exploring ways to improve GP education and training with the HEIW, the RCGP & Dr Nina Muirhead
    • assisting Cardiff University School of Medicine students to undertake research projects on ME
    • representing pwme on the NICE guideline consultation
    • enlisting the support of groups such as the Community Health Council and voluntary organisation councils

2. Helpline – we will continue to provide one to one peer support and information about many aspects of living with ME in Wales via email, telephone and our website

3. Blog, Facebook & Twitter – we want to continue to keep everybody informed about the key research developments, consultation & campaigning opportunities, events & services in Wales and news to inspire or educate pwme and their carers

Other activities – apologies if we are unable to:

  • produce the me voice magazine
  • play a large part in the International Alliance for ME (IAFME)
  • run a major public campaign for ME Awareness week
  • find time to apply for large sums of money to develop projects & employ workers
  • visit local support groups
  • campaign on more than health issues
  • complete the Photography project – the volunteer running it has reluctantly had to withdraw

Help us work to improve health care for ME in Wales:

  • after many years our treasurer really needs to step down for health and family I change the world in just my pyjamasreasons. Can you help us find a replacement treasurer?
  • our secretary could achieve more with someone to share admin tasks
  • encourage more people to raise easy money by shopping online through Amazon Smile and Easy fundraising. We need to fund the website hosting & maintenance, stay insured and cover campaigning costs (travel and communications)
  • be a social media volunteer to help us stay online even when ‘life’ intervenes!

WAMES’ vision is for a Wales where adults and children with ME and CFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.   

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Dr Unger says ‘CFS: It’s real, and we can do better’

Posted on 03/19/2019 by wames

Chronic Fatigue Syndrome: It’s Real, and We Can Do Better

In a Medscape blog post Dr Elizabeth Unger from the US Centers for Disease Control and Prevention (CDC) talks in a 5 minute video for healthcare professionals about the CDC’s revised web content on ME.

She emphasises that it’s a biological disease, the importance of validation and of preventing harm triggered by PEM.

Watch the video and read the transcript by registering with Medscape

Web Resources:

CDC: ME/CFS
ME/CFS in Children
ME/CFS Voice of the Patient
CDC: ME/CFS Programs
2015 Institute of Medicine Report on ME/CFS

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ME & CFS need rigorous science & respectful collaboration

Posted on 03/18/2019 by wames

ME & CFS need rigorous science & respectful collaboration.

There has been a flurry of articles in the media recently accusing internet trolls of forcing a few researchers out of ME/CFS research. WAMES takes the view that all research should be of a high quality, assessed and held to account, especially when it has a major impact on people’s lives.

However criticism of research should always be given in a respectful manner and should not descend into abusive personal attacks. The ability to listen, accept criticism and respond openly, but politely, is essential for all researchers, but also for those who comment on that research. We can all be mistaken or misled, but we can all, hopefully, be persuaded to change our minds, when necessary.

The ME community is understandably angry at the injustice and lack of understanding people with ME have endured in many walks of life, but we also have reason to be heartened by the high standard of biomedical research being carried out around the world, and the many different ways that clinicians, academics, politicians and the general public are beginning  to show their support and willingness to collaborate with us in our mission to remove the blight of neurological ME from our societies. WAMES will continue to report on and celebrate this.

WAMES vision is for a Wales where adults and children with ME and CFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.   

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More volunteers needed for medical student research project

Posted on 03/18/2019 by wames

Cardiff School of Medicine student research projects

Dr Muirhead says:

“Thank you all so much for volunteering and getting in touch with your questions. I’m trying to get back to you all individually but as a person with ME myself this is proving a little challenging.

I just wanted to say thank you so much to everyone who has volunteered for both the Family Quality of Life Questionnaire study and the Role of the GP telephone study. The medical students and tutors at Cardiff University have been very impressed by the level of response.

Impact of ME/CFS on family – more volunteers needed

There are still opportunities to volunteer for the study using questionnaires to measure the impact of ME/CFS on the quality of life of individuals and their family members.

You don’t have to live in Wales to take part. Find out more

We will be sending out questionnaire packs until the end of the week (23rd March) so if you are interested, please e-mail me (as research supervisor) at nina.muirhead@nhs.net”

If you have considered volunteering for this study but decided not to, please let Dr Muirhead or Jan know why jan@wames.org.uk as this information could be informative for the student.

Role of the GP

The student running the project on the role of the GP in care of ME/CFS has written:

“We would like to say a huge thank you to everyone who has been in contact to share their experiences and volunteer for my project. We have been overwhelmed by the amazing response and are looking forward to working with volunteers over the next few weeks.

As this is only a small, six-week project we will have to restrict the number of participants and have now ​reached the number required. The outcome of this project will be shared via the WAMES website.

Please keep an eye out on the WAMES website if you are interested in being involved in similar student research projects as Dr Muirhead hopes to work with more students in the future.”

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Dismissing chronic illness: a qualitative analysis of negative health care experiences

Posted on 03/15/2019 by wames

Dismissing chronic illness: A qualitative analysis of negative health care experiences, by Stephanie McManimen, Damani McClellan, Jamie Stoothoff, Kristen Gleason, Leonard A Jason in Health Care for Women International [Published online: 04 Mar 2019]

 

Research abstract:

In the US, medical training is inadequate regarding the symptomatology, prognosis, and treatment for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). As a result, many physicians lack the appropriate level of knowledge about effective methods for ME and CFS symptom reduction and often suggest inappropriate treatments, such as increased exercise or psychiatric services.

The authors’ purpose in this study was to analyze negative patient experiences with health care professionals. Patients with ME and CFS who reported experiencing a dismissive physician attitude were asked to detail the encounter via open-ended response on an international, online survey. Participant responses were thematically coded and analyzed using processes outlined by Patton.

Emergent themes related to perceived physician attitudes and how they impact patient wellbeing are described and their implications discussed. Additionally, we highlight suggestions for how the health care system can effectively approach this often marginalized patient group.

[Responses were coded into five main themes: Disbelief, Inappropriate Causes, Inappropriate Treatments, Insensitivity, and Lack of Knowledge.]

Read full article

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Epstein-Barr virus induced gene-2 upregulation identifies a particular subtype of CFS/ME

Posted on 03/14/2019 by wames

Epstein-Barr virus induced gene-2 upregulation identifies a particular subtype of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, by Jonathan R Kerr in Frontiers in Pediatrics, 13 March 2019

 

Research abstract:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a chronic
multisystem disease characterised by a variety of symptoms, and exhibits various features of an autoimmune-like disease. Subtypes are well recognised but to date are difficult to identify objectively.

The disease may be triggered by infection with a variety of micro-organisms, including Epstein-Barr virus (EBV). A subset of CFS/ME patients exhibit up regulation of EBV virus induced gene 2 (EBI2) mRNA in peripheral blood mononuclear cells (PBMC), and these patients appear to have a more severe disease phenotype and lower levels of EBNA1 IgG. EBI2 is induced by EBV infection and has been found to be upregulated in a variety of
autoimmune diseases.

EBI2 is a critical gene in immunity and central nervous system function; it is a negative regulator of the innate immune response in monocytes. Its heterogeneous expression in CFS/ME could explain the variable occurrence of a variety of immune and neurological abnormalities which are encountered in patients with CFS/ME.

The EBI2 subtype occurred in 38-55% CFS/ME patients in our studies. Further work is required to confirm the role of EBV and of EBI2 and its oxysterol ligands in CFS/ME, and to identify the most practical means to identify patients of the EBI subtype. There are two EBI2 antagonists currently in development, and these may hold promise for the treatment of CFS/ME patients of the EBI subtype.

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Assessment of Post-Exertional Malaise in patients with ME & CFS

Posted on 03/13/2019 by wames

Assessment of Post-Exertional Malaise (PEM) in patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A patient-driven survey, by Carly S Holtzman, Shaun Bhatia, Joseph Cotler and Leonard A Jason in Diagnostics 2019, 9(1), 26 [Published: 2 March 2019]

 

Research abstract:
Considerable controversy has existed with efforts to assess post-exertional malaise (PEM), which is one of the defining features of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS).

While a number of self-report questionnaires have been developed to assess this symptom, none have been comprehensive, and a recent federal government report has recommended the development of a new PEM measure.

The current study involved a community-based participatory research process in an effort to develop a comprehensive PEM instrument, with critical patient input shaping the item selection and overall design of the tool. A survey was ultimately developed and was subsequently completed by 1534 members of the patient community.

The findings of this survey suggest that there are key domains of this symptom, including triggers, symptom onset, and duration, which have often not been comprehensively assessed in a previous PEM instrument. This study indicates that there are unique benefits that can be derived from patients collaborating with researchers in the measurement of key symptoms defining ME and CFS.

Comment:

Post-Exertional Malaise (PEM) in ME/CFS: what do patients say about it?

The assessment of post-exertional malaise

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Prevalence & characteristics of CFS/ME in Poland

Posted on 03/12/2019 by wames

Prevalence and characteristics of chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study, by Joanna Słomko, Julia L Newton, Sławomir Kujawski, Małgorzata Tafil-Klawe, Jacek Klawe, Donald Staines, Sonya Marshall-Gradisnik, Pawel Zalewski in BMJ Open Vol 9, #3 article e023955 [Published March 7, 2019]

 

Research abstract:

Objectives:
The aim of this study was to estimate the prevalence of chronic fatigue syndrome /myalgic encephalomyelitis (CFS/ME) and describe illness characteristics in a community population in Poland.

Design: cross-sectional study.

Setting: Poland.

Participants:
Of the cohort of 1400 who self-presented with fatigue only 69 subsequently were confirmed as having CFS/ME using the Fukuda criteria.

Main outcome measures:
Participants completed the following screening symptom assessment tools: Chalder Fatigue Scale, Hospital Anxiety and Depression Scale (HADS), Epworth Sleepiness Scale (ESS), Composite Autonomic Symptom Score 31 (COMPASS 31), Quality of Life Scale (QOLS). Haemodynamic and autonomic parameters were automatically measured at
rest with a Task Force Monitor.

Results:
In 1308, from 1400 (93%) individuals who identified themselves as fatigued, recognised chronic conditions were identified, for example, neurological (n=280, 21.5%), neurodegenerative (n=200, 15%), psychiatric (n=654, 50%) and immunologic (n=174, 13.5%) disorders. The remaining 69 participants (mean age 38.3p/m8.5) met the Fukuda definition for CFS/ME and had baseline objective assessment.

The majority had experienced symptoms for over 2 years with 37% having symptoms for 2-5 years and 21.7% for more than 10 years. The COMPASS 31 indicated that 50% have
symptoms consistent with orthostatic intolerance. About 43/69 (62%) had Epworth sleepiness scores ≥10, ie, consistent with excessive daytime sleepiness, 26/69 (38%) had significant anxiety and 22/69 (32%) depression measured by HADS A & D. Quality of life is significantly impaired in those with Fukuda criteria CFS (QLS score 64p/m11) with significant negative relationships between quality of life and fatigue (p<0.0001), anxiety (p=0.0009), depression (p<0.0001) and autonomic symptoms (p=0.04).

Conclusion:
This is the first study to summarise illness characteristics of Polish CFS/ME patients. Our study has confirmed that fatigue is a common and under-recognised symptom affecting the Polish population.

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Understanding the role of the GP in caring for patients with ME/CFS – volunteers needed

Posted on 03/12/2019 by wames

Understanding the role of the GP in caring for patients with ME/CFS – volunteers needed

 

Telephone interviews

A 3rd year medical student at Cardiff University would like to interview 10-20 people about their experience with ME/CFS, either as a patient or close relative/ carer.

The interviews will be semi-structured, and participants will be free to guide the conversation as much as they wish, however there will be some key themes the researcher will ask about. These include:

  • diagnosis
  • current management plan
  • the role of the GP
  • support services accessed
  • where things could be improved.

Phone calls will be audio recorded and last no longer than 2 hours, though participants may request to complete in more than one session and can withdraw at any time without giving a reason.

 

Full project title

Understanding the role of the General Practitioner in caring for patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in the community.

 

Aims of the project:

  • identify factors that patients view as important to their management in primary care
  • look at the current training and support for GPs regarding ME/CFS
  • evaluate how this requires improvement
  •  make suggestions for future changes or adaptations.

 

Confidentiality

All recordings will be kept for the six week duration of the research study before being destroyed. All information taken from the interviews will be anonymised including names of healthcare professionals mentioned in your interviews. Files will be stored securely.

 

Do you want to take part?

Email research supervisor Dr Nina Muirhead with your home address and telephone number   nina.muirhead@nhs.net

You will then be contacted by the research student and a date for the interview will be arranged between 18th and 28th March.

The student’s research report may also be taken to medical conferences or published. You will not be identified in any report or publication and will be able to obtain a copy of the published results by contacting the researcher.

University of Cardiff, School of Medicine   
UHW Main Building, Heath Park
Cardiff       CF14 4XN

 

 

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Mitochondrial complex activity in permeabilised cells of CFS patients using two cell types

Posted on 03/11/2019 by wames

Mitochondrial complex activity in permeabilised cells of CFS patients using two cell types, by Cara Tomas, Audrey E Brown, Julia L Newton and Joanna L Elson in Peer Journal, 1 Mar 2019

 

Article abstract:

Abnormalities in mitochondrial function have previously been shown in chronic fatigue syndrome (CFS) patients, implying that mitochondrial dysfunction may contribute to the pathogenesis of disease.

This study builds on previous work showing that mitochondrial respiratory parameters are impaired in whole cells from CFS patients by investigating the activity of individual mitochondrial respiratory chain complexes.

Two different cell types were used in these studies in order to assess individual complex activity locally in the skeletal muscle (myotubes) (n = 6) and systemically (peripheral blood mononuclear cells (PBMCs)) (control n = 6; CFS n = 13). Complex I, II and IV activity and respiratory activitysupported by fatty acid oxidation and glutaminolysis were measured usingextracellular flux analysis. Cells were permeabilised and combinations of substrates and inhibitors were added throughout the assays to allow states of mitochondrial respiration to be calculated and the activity of specific aspects of respiratory activity to be measured.

Results showed there to be no significant differences in individual mitochondrial complex activity or respiratory activity supported by fatty acid oxidation or glutaminolysis between healthy control and CFS cohorts in either skeletal muscle (p ≥ 0.190) or PBMCs (p ≥ 0.065).

This is the first study to use extracellular flux analysis to investigate individual mitochondrial complex activity in permeabilised cells in the context of CFS. The lack of difference in complex activity in CFS PBMCs suggests that the previously observed mitochondrial dysfunction in whole PBMCs is due to causes upstream of the mitochondrial respiratory chain.

Dr Cara Tomas explains the results from a new study on energy production and mitochondria

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