Shop online through easyfundraising.org.uk – raise ‘free’ money for WAMES

Posted on 03/21/2019 by wames

Do you shop online?

Register with easyfundraising.org.uk in 3 easy steps and raise money to keep WAMES campaigning at no cost to yourself.

Every time you want to shop, go to easyfundraising.org.uk and select any of 2,700+ stores. Retailers include:

  • Amazon
  • high street stores like John Lewis, M&S, Argos,
  • Ebay
  • Grocery stores like Sainsbury, Tesco
  • Transport sites like Trainline, Virgin
  • Insurance companies
  • Mobile phone companies
  • Holiday companies like Thomson, and many more…

Ask friends and families, employers and colleagues to join easyfundraising and ‘choose WAMES’.

A BIG thank you to all who have already signed up. The money you have raised makes a big difference to WAMES.

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Pharmaceutical interventions in CFS: a literature-based commentary

Posted on 03/21/2019 by wames

Pharmaceutical Interventions in Chronic Fatigue Syndrome: A Literature-based Commentary, by  Spencer Richman, Matthew C Morris, Gordon Broderick, Travis JA Craddock, Nancy G Klimas, Mary Ann Fletcher in Clinical Therapeutics [Available online 11 March 2019]

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disorder characterized by prolonged periods of fatigue, chronic pain, depression, and a complex constellation of other symptoms. Currently, ME/CFS has no known cause, nor are the mechanisms of illness well understood. Therefore, with few exceptions, attempts to treat ME/CFS have been directed mainly toward symptom management.

These treatments include antivirals, pain relievers, antidepressants, and oncologic agents as well as other single-intervention treatments. Results of these trials have been largely inconclusive and, in some cases, contradictory. Contributing factors include a lack of well-designed and -executed studies and the highly heterogeneous nature of ME/CFS, which has made a single etiology difficult to define.

Because the majority of single-intervention treatments have shown little efficacy, it may instead be beneficial to explore broader-acting combination therapies in which a more focused precision-medicine approach is supported by a systems-level analysis of endocrine and immune co-regulation.

Read full article

Excerpt from Discussion:

The current literature on the treatment of ME/CFS leans strongly toward a single conclusion that there is no single solution. The assumption that a single drug can successfully treat ME/CFS is likely incorrect.

The multifaceted, complex nature of ME/CFS may instead be more effectively treated with combination therapies, tailored to the specific causes and symptoms present in each individual patient. These potential therapies will be supported by advancements in 2 fields.

First, advancements in systems biology and systems-level analysis of the biological drivers behind ME/CFS will more clearly inform researchers as to which illness mechanisms are viable targets for treatment.  Systems biology approaches have already been undertaken to analyze gene coexpression networks, perform pathway analysis, and explore metabolic pathway perturbations in ME/CFS.  Generating robust tools for system-wide analysis of ME/CFS, at all of the conventional “-omics” levels, may prove invaluable for the discovery of a treatment or cure.

While systems biology approaches are needed to conduct basic research into the underlying causes of ME/CFS, personalized medicine and translational medicine are the necessary complements to such research. Personalized or precision medicine is a field that seeks to tailor treatments to individuals or narrow groups of individuals based on genetic or epigenetic makeup as well as a variety of other nongeneralizable patient characteristics. It has been promoted by some as the future of medicine, and it may prove invaluable in treating patients with ME/CFS.

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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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