ME in Wales in the media, 24 Oct 2018

Posted on 10/25/2018 by wames

Catch up with the media coverage of the ME and the #TimeForUnrestWales campaign.

Wales today at 6.30pm – the item on ME starts at 15:30, and is little changed from the earlier news bulletin. In the broadcast Owen Hughes says the All Wales Implementation group is working with WAMES to develop services.

Jan comments:

I represent pwme on the All Wales Implementation group, but my primary message for years has been the need for doctors and other NHS staff to be trained to understand neurological ME. Listening to pwme and studying the latest research is critical. Only then can the NHS develop services that actually meet the needs of patients.

Owen says Wales has to follow the old NICE guidelines but is this the case? Not all English clinics use the Bio Psycho Social version of GET & CBT for ME (based on the PACE trial). Some teach pacing. Clinical judgement CAN be used, when an alternative approach is shown to be helpful or patients are unhappy with the proposed approach. WAMES does not accept Wales HAS to implement controversial and unwanted therapies.

ME and chronic fatigue: ‘Some doctors don’t believe you’re sick’ 

Charles Shepherd, medical adviser to the ME Association, said:

“My experience from contact with patients in Wales is that many GPs are still very unsure and uncertain about how to diagnose this illness. They are equally uncertain about how to manage this illness.

Jan Russell, of Welsh Association of ME & CFS Support (WAMES), added :

the lack of diagnosis and help for patients is “a health and social care crisis, even a humanitarian crisis”.

‘ME makes me grieve for my past life’

Eye on Wales – a half hour programme about ME in Wales

 

 

Sefyllfa i gleifion ME yng Nghymru yn ‘warthus’ [The Situation for ME patients in Wales is ‘disgraceful’ ]

Newyddion 9 – the 5 minute lead story was on ME.

 

ME: “Mae ei bywyd hi jest wedi stopio” – the story of how severe ME has affected the life of Natalie and her fiance Jonathan. Translation: ME: her life has just stopped
Unrest in the Senedd with MESiG on Business News Wales website, 26 October 2018

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Diagnosis and Management of ME & CFS – Dr David Kaufman’s training video for doctors

Posted on 10/24/2018 by wames

Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Dr David Kaufman’s training video for doctors shows how straight forward it is to begin the education for doctors in the true nature of ME.

Unrest Film
Published on 16 Oct 2018

This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is part of the Unrest Continuing Education module, made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch Unrest online for free and receive Continuing Education credit.

Transcript of video

#MEAction fact sheet: Diagnosis & management of myalgic encephalomyelitis

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ME healthcare in Wales is in the news – ‘scandalous’, ‘a health & social care crisis’!

Posted on 10/24/2018 by wames

ME healthcare in Wales is in the news!

As, people with ME prepare to meet AMs at the Senedd today, 24th October 2018, to watch an excerpt of the award winning film Unrest, the BBC is featuring ME on the TV, Radio and online:

ME and chronic fatigue: ‘All I could do was lie in bed’

A woman who was diagnosed with ME says she struggled to get out of bed for several years after her diagnosis of the chronic condition.

Anne Kavanagh, 68, from Bridgend, had to give up work and check in to a self help centre, but was told she was not eligible for benefits.

The situation for patients in Wales has been described as “scandalous” by the ME Association.

The Welsh Government said health boards were responsible for their patients.

What is ME?
Myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is usually triggered by a viral infection which leads to muscle fatigue, pain and neurological symptoms such as short term memory loss.

About 13,000 people in Wales are thought to suffer from ME, and 70% of those are women.

Calls to scrap common treatment for ME
Chronic fatigue syndrome: What not to say

Ms Kavanagh, a former head of special needs at a comprehensive school, started showing symptoms for the condition 10 years ago.

“I was an exceedingly energectic person,” she told BBC Eye on Wales. “My job was very exacting but I loved it.

“I was a dog trainer, travelled all over the country. My life was good.”

After contracting a virus which gave her no symptoms other than a temperature, Ms Kavanagh was repeatedly signed off work with post viral fatigue as she struggled to get out of bed and return to work.

She says she felt “hopeless” because of the condition and her weight dropped to less than six stone, but added she was “worried whether people would believe I was genuinely ill”.

Charles Shepherd, medical adviser to the ME Association, said: “My experience from contact with patients in Wales is that many GPs are still very unsure and uncertain about how to diagnose this illness. They are equally uncertain about how to manage this illness.

“There are five adult services in Wales but none of them are multidisciplinary physician led which is what these services should be. Overall the situation in Wales is scandalous.”

Chronic fatigue trial results ‘not robust’

Jan Russell, of Wales Action of ME & CFS support (WAMES), added the lack of diagnosis and help for patients is “a health and social care crisis, even a humanitarian crisis”.

But Owen Hughes, who chairs a group to improve ME services, said progress had been made, despite issues.

“Progress has been slow. There are some very good services in Wales and it’s a shame that not everyone has those services on their doorstep,” he said.

The Welsh Government said: “Health boards in Wales are responsible for the healthcare needs of their population.”

After being forced to officially resign from her job as a teacher two years after falling ill, Ms Kavanagh underwent an assessment for Employment Support Allowance (ESA), but said she was told she was not eligible, an experience she describes as “humiliating”.

“They didn’t ask the appropriate questions. There was no relation to what I was feeling,” she added.

“I’d have had better luck if I’d had a bad back.”

Eventually, Ms Kavanagh was diagnosed with Chronic Fatigue Syndrome on the NHS and was offered some support early in the morning, but she had no way of getting to the centre to undergo rehabilitation exercises.

She found a place to start her recovery at the Sandville self-help centre in Porthcawl, where she was able to visit three times a week to do simple exercises.

“They just said ‘come when you’re ready’,” she said.

“I wouldn’t be where I am now without Sandville. It took about five years for them to see the outgoing, happy person that I was.”

For details of organisations offering help and support with ME/CFS visit bbc.co.uk/actionline

Eye on Wales is on BBC Radio Wales at 18:30 BST on Wednesday.

#TimeForUnrestWales

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School functioning in adolescents with CFS [Australia]

Posted on 10/22/2018 by wames

School functioning in adolescents with Chronic Fatigue Syndrome, by Sarah Jenette Knight,  Jennifer Politis,  Christine Garnham,  Adam Scheinberg and  Michelle Anne Tollit in Front. Pediatr., 16 October 2018

Background: 

It is well known that adolescents with chronic fatigue syndrome (CFS) experience greater school absenteeism compared to healthy adolescents. Less is known about other important aspects of school functioning including school participation, school connectedness, and academic performance in students with CFS. The aim of this study was to compare school functioning as a multifaceted construct in adolescents with CFS to healthy adolescent peers. We also explored whether illness factors were associated with school functioning in adolescents with CFS.

Methods:

Thirty-nine participants with CFS and 28 healthy controls (aged 13–17 years) completed a range of subjective and objective measures of school functioning, as well as measures of fatigue and emotional symptoms.

Results: 

Adolescents with CFS demonstrated significantly higher rates of school absence, as well as poorer school-related quality of life, reduced school participation, poorer connectedness with school, and reduced academic performance. Fatigue severity and emotional symptoms were significantly associated with most aspects of school function.

Conclusions: 

Adolescents with CFS are at increased risk for poor school functioning across a range of indicators which extend beyond school absenteeism.

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Withdrawn – Traditional Chinese medicinal herbs for the treatment of idiopathic chronic fatigue and chronic fatigue syndrome

Posted on 10/19/2018 by wames

Traditional Chinese medicinal herbs for the treatment of idiopathic chronic fatigue and chronic fatigue syndrome – This review has been withdrawn from the Cochrane Database of Systematic Reviews

Cochrane Systematic Review – Intervention Version published: 15 October 2018

Reason for withdrawal from publication

Supporting better health for those receiving care is central to Cochrane’s mission to promote evidence‐informed health decision‐making by producing high quality, relevant, accessible systematic reviews and other synthesized research evidence.

The Cochrane Common Mental Disorders Group is currently undertaking a strategic portfolio assessment of all existing and planned reviews and protocols, including those relating to Chronic Fatigue Syndrome (CFS).

During the course of our portfolio assessment, we are aiming to ensure that the most up to date evidence is available in the Cochrane Library to inform decision‐making. This latest version of the review was published in 2009. The Cochrane Common Mental Disorders Group are therefore temporarily withdrawing this review, with the full support of the author team, to allow time to determine whether the evidence is up‐to‐date.

The editorial group responsible for this previously published document have withdrawn it from publication.

More about the publication

 

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Final ME/CFS NICE guideline scope published, Oct 2018

Posted on 10/18/2018 by wames

Communication RE: NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020)

The final scope and equality impact assessment for this NICE guideline have now been published [Oct 16th], along with all the stakeholder comments that were received during consultation and our responses to these comments: documents

We would like to thank you for your continued involvement and interest in this guideline. The comments received during the consultation period helped us to develop and refine the scope.

Your organisation [WAMES] has been identified as a key stakeholder for this topic; we will contact you again when the draft guideline is released for consultation and ask that you please prioritise sending us your comments.

Provisional Schedule

Draft guidance consultation    21 April 2020 – 02 June 2020
Expected publication                14 October 2020

Committee members [more appointments to come]

Chair

  • Peter Barry Consultant Paediatric Intensivist, University Hospitals of Leicester

Vice Chair

  • Ilora Finlay Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales,Velindre NHS Trust, Cardiff

Core members / Members

  • Secondary care paediatrician: Theo Anbu (Alder Hey, Liverpool)
  • Physician with an interest in ME/CFS:   Mike Beadsworth (Consultant
    Infectious Diseases, Liverpool)
  • Physiotherapist:   Joanne Bond-Kendall, Bath (MAGENTA & FITNET researcher)
  • Social worker:   Tony Crouch (Social work advisor – works with 25% Group & TYMES Trust)
  • Psychologist:    Jo Daniels, Bath   (Interests: CBT, anxiety disorders)
  • GP:               Luis Nacul (leads the CureMEteam and the UK ME/CFS Biobank)
  • Occupational therapist: Susan Watson, (Leeds & West Yorkshire CFS/ME Service)
  • Community paediatrician:
  • Dietician:
  • Epidemiologist:
  • Nurse with specialist interest in ME/CFS:
  • Community children’s nurse:
  • Lay member:  Saran Bonser
  • Lay member:  Sally Burch (http://sallyjustme.blogspot.com)
  • Lay member:  Nicola Kidby
  • Lay member:  Adam Lowe  (#MEAction)
  • Lay member:  Dorinda Jack
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Chronic Fatigue Syndrome: from chronic fatigue to more specific syndromes

Posted on 10/17/2018 by wames

Chronic Fatigue Syndrome: from Chronic Fatigue to More Specific Syndromes, by S Blitshteyn, P Chopra in Eur Neurol 2018; 80:73–77

 

Research Article:

In the last decade, a group of chronic disorders associated with fatigue (CDAF) emerged as the leading cause of chronic fatigue, chronic pain, and functional impairment, all of which have been often labeled in clinical practice as chronic fatigue syndrome (CFS) or fibromyalgia.

While these chronic disorders arise from various pathophysiologic mechanisms, a shared autoimmune or immune-mediated etiology could shift the focus from symptomatic treatment of fatigue and pain to targeted immunomodulatory and biological therapy.

A clinical paradigm shift is necessary to reevaluate CFS and fibromyalgia diagnoses and its relationship to the CDAF entities, which would ultimately lead to a change in diagnostic and therapeutic algorithm for patients with chronic fatigue and chronic pain. Rather than uniformly apply the diagnoses of CFS or fibromyalgia to any patient presenting with unexplained chronic fatigue or chronic pain, it may be more beneficial and therapeutically effective to stratify these patients into more specific diagnoses in the CDAF group.

Read full article

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Immunosignature analysis of ME/CFS – promising diagnostic biomarker

Posted on 10/15/2018 by wames

Immunosignature Analysis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Oliver P Günther, Jennifer L Gardy, Phillip Stafford, Øystein Fluge, Olav Mella, Patrick Tang, Ruth R Miller, Shoshana M Parker, Stephen A Johnston, David M Patrick in Molecular Neurobiology (2018) pp 1-9 [Published online: 8 October 2018]

Research abstract:

A random-sequence peptide microarray can interrogate serum antibodies in a broad, unbiased fashion to generate disease-specific immunosignatures. This approach has been applied to cancer detection, diagnosis of infections, and interrogation of vaccine response.

We hypothesized that there is an immunosignature specific to ME/CFS and that this could aid in the diagnosis. We studied two subject groups meeting the Canadian Consensus Definition of ME/CFS. ME/CFS (n = 25) and matched control (n = 25) sera were obtained from a Canadian study.

ME/CFS (n = 25) sera were obtained from phase 1/2 Norwegian trials (NCT01156909). Sera from six healthy controls from the USA were included in the analysis. Canadian cases and controls were tested for a disease immunosignature.

By combining results from unsupervised and supervised analyses, a candidate immunosignature with 654 peptides was able to differentiate ME/CFS from controls. The immunosignature was tested and further refined using the Norwegian and USA samples. This resulted in a 256-peptide immunosignature with the ability to separate ME/CFS cases from controls in the international data sets.

We were able to identify a 256-peptide signature that separates ME/CFS samples from healthy controls, suggesting that the hit-and-run hypothesis of immune dysfunction merits further investigation. By extending testing of both our signature and one previously reported in the literature to larger cohorts, and further interrogating the specific peptides we and others have identified, we may deepen our understanding of the origins of ME/CFS and work towards a clinically meaningful diagnostic biomarker.

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GET for ME/CFS is not effective & unsafe – re-analysis of a Cochrane review

Posted on 10/10/2018 by wames

Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review, by Mark Vink & Alexandra Vink-Niese in Health Psychology Open, Vol 5, issue: 2 [First Published October 8, 2018]

 

Review article abstract:

The analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise therapy is effective.

Because of the failure to report harms adequately in the trials covered by the review, it cannot be said that graded exercise therapy is safe.

The analysis of the objective outcomes in the trials provides sufficient evidence to conclude that graded exercise therapy is an ineffective treatment for myalgic encephalomyelitis/chronic fatigue syndrome.

Article Conclusion:

The GET trials reviewed here are inherently biased: use of exercise may attract only the mildly affected and may deter the more disabled patients from participating. These trials go back for more than two decades, at the cost of considerable money and involving large numbers of patients. The flaws in the review and the trials, as discussed above, all created a bias in favour of the exercise intervention. Despite these flaws, they have found no significant evidence of objective improvement. The analysis of the objective outcomes in the trials provides sufficient evidence to conclude GET is an ineffective treatment for ME/CFS.

Most studies failed to report on safety or adverse reactions, and White et al. (2011), one of the two studies that did, used an unrealistic definition. ME is characterised by an abnormally delayed muscle recovery after trivial exertion (Ramsay, 1988), commonly referred to as PEM. Exercise physiology studies reveal abnormalities in patients’ responses to exertion.

Yet PEM is not a requirement for diagnosis according to the Oxford criteria, used by five of the studies, and only an optional criterion according to the Fukuda criteria, used by the other three studies in the review. If patients do not suffer from PEM, it is likely that they will have no problems exercising. This might be an important reason why outside of clinical trials things are different with many patients, who do suffer from PEM, reporting deterioration with GET. Given these considerations, one cannot conclude that GET is safe.

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School nurses can improve the lives of students with ME/CFS

Posted on 10/05/2018 by wames

School nurses can improve the lives of students with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Kenneth J. Friedman, Beth Mattey, Faith Newton in NASN School Nurse  [First Published September 15, 2018]

Article abstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that is defined and diagnosed by its symptoms: extreme fatigue made worse by physical and mental activity, pain and decreased mental stamina, among others.

A long-held, erroneous belief that ME/CFS is not a physiological illness has persisted among some clinicians, leading to the denial of a patient’s physical illness and attributing the symptoms to other causes.

The debilitating effects of ME/CFS in the pediatric population can affect all aspects of academic, social, emotional, and physical development. ME/CFS has been diagnosed in children younger than 10 years. Therefore, the school nurse is likely to encounter one or more students in the various stages of this disease, putting the school nurse in a position to ameliorate the impact of this potentially devastating chronic condition.

Read full article              Excerpt:

Role of the School Nurse
The role of the school nurse in assisting a student with ME/CFS falls into three main categories:

(1) being informed about the disease,

(2) recognizing the signs and symptoms of the disease in the student, and educating school staff and families about the disease and its impact, and

(3) advocating for accommodations and modifications in the school setting, and assisting the student in managing what is most likely to be a modified educational program on his or her return to school (Centers for Disease Control and Prevention [CDC], 2017b).

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