Updated NICE guideline committee list

Posted on 11/05/2018 by wames

NICE added an updated (but still incomplete) committee membership list to their website on 1 November 2018.  The Committee will operate as an advisory Committee to NICE’s Board, developing a guideline on ME/CFS.

Membership list

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

Secondary care paediatrician

Theo Anbu, Consultant general paediatrician and lead for paediatric CFS/ME, Alder Hey Children’s NHS Foundation Trust, Liverpool

Physician with an interest in ME/CFS

Michael Beadsworth, Consultant in Infectious Diseases, Clinical Director Specialist and
Academic Medicine, Clinical Lead CFS/ME Regional Services, Royal Liverpool University Hospital

Physiotherapist

Joanne Bond Kendall, Senior Physiotherapist, Specialist paediatric CFS/ME, Bath

GP

Chris Burton Professor of Primary Medical Care, University of Sheffield

Social worker

Tony Crouch, Social work advisor

Psychologist

Jo Daniels, Senior Lecturer Clinical Psychology, University of Bath. Chartered
Clinical Psychologist, North Bristol NHS Trust

Physician with an interest in ME/CFS

Gabrielle Murphy Clinical Lead, Fatigue Service Royal Free London NHS Foundation Trust

GP

Luis Nacul GP

Community paediatrician

Alan Stanton Consultant Community Paediatrician, University Hospitals Birmingham

Occupational therapist

Susan Watson Senior occupational therapist, Leeds and West Yorkshire CFS/ME Service

Lay members

  • Saran Bonser
  • Sally Burch
  • Nicola Kidby
  • Adam Lowe
  • Dorinda Jack

Community paediatric nurse – To be appointed
Nurse with experience in ME/CFS – To be appointed
Dietitian – To be appointed
Physician with an interest in ME/CFS (1 or 2)- To be appointed

WAMES is concerned by the predominance of committee members from institutions which promote the use of GET and CBT for people with ME.

We understand that applications from doctors working outside the NHS have been rejected, but that talks are ongoing to redress the balance.

We are pleased that 5 patients have been appointed, which is more than normal.

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CFS & the somatic expression of emotional distress

Posted on 11/02/2018 by wames

Chronic fatigue syndrome and the somatic expression of emotional distress: applying the concept of illusory mental health to address the controversy, by AD Bram, KA Gottschalk, WM Leeds in J Clin Psychol. 2018 Aug 28. [Epub ahead of print]

Abstract:

OBJECTIVE:

The process of somatization in chronic fatigue syndrome (CFS) was investigated using the concept of illusory mental health (IMH). IMH involves self-reporting low emotional distress alongside performance-based assessment of distress.

METHOD:

We studied IHM and physical symptoms in 175 women across four groups: (a) CFS plus depression; (b) CFS with no depression (CFS-ND); (c) depressive disorder without CFS; and (d) healthy controls (HC). IMH was assessed using a self-report measure plus the performance-based Early Memory Index (EMI).

RESULTS:

CFS-NDs were no more likely to have IMH compared with HCs. Among the CFS-NDs, IMH was associated with more physical symptoms. For CFS-NDs, EMI added meaningfully beyond self-reported mental health in predicting physical symptoms.

CONCLUSION:

Findings refute reducing CFS to somatization, but there is a subgroup of CFS whose lacking access to emotional distress is associated with heightened physical symptomatology.

Read full article.

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Exercise-induce hyperalgesia, complement system & elastase activation in ME/CFS

Posted on 10/31/2018 by wames

Exercise-induce hyperalgesia, complement system and elastase activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – a secondary analysis of experimental comparative studies, by Andrea Polli, Jessica Van Oosterwijck, Mira Meeus, Luc Lambrecht,  Jo Nijs, Kelly Ickmans in Scandinavian Journal of Pain [Published Online: 2018-10-16]

Research abstract:

Background and aims:
The interaction between the immune system and pain has been thoroughly explored in the recent decades. The release of inflammatory mediators from immune cells has the capability of activating neurons and glial cells, in turn sensitizing the nervous system.

Both immune system alterations and pain modulation dysfunctions have been shown in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) following exercise. However, no studies tried to explore whether these two phenomena are linked and can explain exercise-induced symptoms worsening in people with ME/CFS.

We hypothesized that exercise-induced changes in descending pain modulation is associated to changes in immune system functions. We used complement system product C4a and elastase activity as indicators of immune system activity.

Methods:
The study design was a secondary analysis of controlled experimental studies. Twenty-two patients with ME/CFS and 22 healthy sedentary controls were enrolled. In experiment 1, subjects performed an aerobic submaximal exercise test; in experiment 2 they underwent a self-paced exercise test. One week of rest period were set between the two exercise tests. Before and after each experiment, subjects underwent clinical assessment, pain thresholds (PPTs) measurement, and blood sampling. Immune system function was assessed measuring complement system C4a products and elastase activity.

Results:
Changes in elastase activity were not associated to changes in PPTs. Associations were observed in the ME/CFS group between changes in PPTs and C4a products, following both types of exercise. After submaximal exercise, the change in C4a products was associated with the change in PPT at the thumb in patients (r=0.669, p=0.001). Similarly, after self-paced exercise the change in C4a products was associated witht the change in PPT at the calf in patients (r=0.429, p=0.047). No such correlations were found in healthy controls. Regression analysis showed that C4a changes after the submaximal exercise significantly predicted the change in PPTs (R2=0.236; p=0.02).

Conclusions:
Moderate associations between exercise-induced changes in PPTs and immune system activity were found only in ME/CFS. The change in the complement system following submaximal exercise might be able to explain part of the change in patient’s pain thresholds, providing evidence for a potential link between immune system alteration and dysfunctional endogenous pain modulation. These results have to be taken with caution, as only one out of three measures of PPTs was found associated with C4a changes. We cannot reject the hypothesis that C4a might therefore be a confounding factor, and changes during exercise might be mediated by other mechanism.

Implications:
Immune system changes following exercise might contribute to exercise-induced symptoms worsening in patients with ME/CFS. However, the role of the complement system is questionable.

Read the full article

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ME: “Her life has just stopped”

Posted on 10/29/2018 by wames

ME: “Her life has just stopped”

A translation of ME: “Mae ei bywyd hi jest wedi stopio” online at BBC Cymru fyw, 25 October 2018

Natalie Price, the girlfriend of Jonathan Vaughan, has been suffering from ME (Myalgic Encephalomyelitis) for four years. This is a condition that causes extreme fatigue, and prevents the person suffering from being able to live a normal life.

Jonathan spoke at a Senedd event on Wednesday October 24 where a movie about the condition was shown.

In his own honest words, he spoke about what it was like to live with the condition, and the effect it had on him and Natalie.

I met Natalie almost five years ago, and we got together soon after. She loved running, she became an incredible artist. She studied – just finished one grade and started on another, in dietetics.

 

 

 

 

 

 

 

 

 

In September 2016 she had to stop working part-time – she had been ill for about two and a half years – and in March 2017 she had to leave university, It was a very difficult decision.

In June 2018, we went to a doctor’s appointment … and that is the last time she went down the stairs. She’s been stuck in bed since.

I have to stand and watch a decisive, person who was full of life changing into someone who cannot even eat a bowl of soup now because it takes too much energy. Her life has just stopped.

I care for her full time, and also work full time. I cook, clean, wash the clothes, change the bedding, put magnesium oil on her legs, order the drugs and so on. And when she needs a shower, she sits on a chair in the bath and I wash her.

This is obviously not fun.

Told to google it…

The diagnosis took quite a long time – about two years, which is just below the average – but it was not great. We had a ‘little advice from the GP at that time, but it only took two words – “Google it”.

The doctor said there’s nothing in Wales, no expert, no one can help. So we had to go on forums and find out for ourselves.

Of course, through trying to deal with the fact that her body had failed, she became depressed. The doctor started prescribing anti-depressant tablets. The first drug exacerbated her symptoms, and she stopped getting out of the house.

The new drug she takes now affects parts of the brain that increase the sensitivity to light and sound. So being on the drugs, her ability to watch television at all has gone. Thank goodness for audio books. That’s the only thing we’ve really got left.

 

 

 

 

 

 

 

 

In terms of healthcare, we’ve not got a lot of help. We asked for her to have magnesium injections, but you cannot get these on the NHS, so I mix saline and Epsom strong salts. Natalie takes it with a nebuliser every day, for about half an hour to a hour, with a mask. And nebulisers are noisy, so this really does not help with her sensitivity to noise.

Living in a dark room

There has been a lot of research into B12 for ME patients, and almost all ME patients I have spoken to have noticed significant improvement after taking B12. In Natalie, ‘significant’ is going to the toilet twice a day instead of once, because that’s the only time she can get out of bed.

We looked into this, but Nathalie’s B12 levels were too high to get it from the doctor. So we ship it all over from Germany, and I give the injections to her. Luckily, Mum became a nurse, so she taught me how to do it.

We’ve been doing this for about five weeks, and Natalie, at last, can spend some two hours on her phone every day. This is, literally, her only window on the world – because light is  so painful for her, we’ve had to block the windows. She spends her days in a dark room.

And the sensitivity is so bad, I can not stay in the room very long. I can see my fiance for about half an hour a day. She was going to become my wife two years ago, but obviously it did not happen …

I’m proud to be Welsh and live in Wales – we look after each other here. So it’s so weird that the only advice we got with the diagnosis of ME was to “Google it”.  Help has to come from somewhere.

#TimeForUnrestWales

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Does fatigue & distress in a clinical cohort of adolescents with CFS correlate with fatigue and distress in their parents?

Posted on 10/28/2018 by wames

Does fatigue and distress in a clinical cohort of adolescents with CFS correlate with fatigue and distress in their parents? by Maria E Loades, Katherine  A Rimes, S Ali, Kate Lievesley, Trudie Chalder in Child: Care, Health and Development, 20 Oct 2018 [preprint]

Research abstract:

Objectives
Previous studies have found that parents of children with CFS are more fatigued, and mothers are more distressed than healthy controls. Managing the disabling symptoms of CFS can result in disruption and burden for the family. Most research has focused on mothers. This study sought to further explore the associations between adolescent fatigue
and distress, and parental fatigue and distress, as well as family functioning, including both mothers and fathers.

Design
Cross‐sectional study of a clinical cohort of consecutive attenders at a specialist chronic fatigue unit.

Methods
Questionnaires were completed by adolescents (N=115, age 11-18) with a confirmed diagnosis of CFS and their mothers (N=100) and fathers (N=65)..

Results
Maternal fatigue was significantly correlated with maternal distress, but not with adolescent fatigue, depression, anxiety or functioning.

This pattern held true for paternal fatigue. Maternal and paternal anxiety and depression were significantly correlated with family functioning. Paternal and maternal distress were correlated with each other. Mothers and fathers tended to have a consistent view of family
functioning. Family functioning, specifically being overwhelmed by difficulties and scoring lower on strengths and adaptability was positively associated with adolescent depression. Unexpectedly, higher levels of adolescent fatigue and poorer physical functioning were
associated with better family functioning as rated by the mother.

Conclusions
Parents of adolescents with fatigue scored near to or within normative range for non‐clinical samples on distress, fatigue and family functioning. Parental distress may contribute to or result from poorer family functioning. Family functioning, particularly building strengths and adaptability, may be clinically important in CFS, as well as
attending to parental, (particularly paternal) distress in families where adolescents are low in mood.

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The development of an instrument to assess post-exertional malaise in patients with ME & CFS

Posted on 10/26/2018 by wames

The development of an instrument to assess post-exertional malaise in patients with myalgic encephalomyelitis and chronic fatigue syndrome, by Leonard A Jason, Carly S Holtzman, Madison Sunnquist, Joseph Cotler in Journal of Health Psychology, 24 Oct 2018 [Preprint]

Research abstract:

Post-exertional malaise, or a variation of this term, is a key symptom of myalgic encephalomyelitis and chronic fatigue syndrome, as this symptom is mentioned in almost all myalgic encephalomyelitis and chronic fatigue syndrome case definitions.

Until now there has not been a comprehensive questionnaire to assess post-exertional malaise. To rectify this situation, in this article we describe the development of a new questionnaire, called the DePaul Post-Exertional Malaise Questionnaire, which was based on input from hundreds of patients.

Preliminary validation was provided by the findings of significant and predictable relationships between different domains of this post-exertional malaise questionnaire and physical functioning.

Download full text pdf from this link

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Situation for ME patients in Wales is ‘disgraceful’ (English translation)

Posted on 10/26/2018 by wames

Situation for ME patients in Wales is ‘disgraceful’

a translation of: Sefyllfa i gleifion ME yng Nghymru yn ‘warthus’ on the BBC Cymru fyw website, 24 Oct 2018 (This translation is not definitive, it may need some tweaking!)

Emma-Jayne Lloyd from Cardiff shares her experience of living with the condition of ME.

The situation for people in Wales who suffer from the condition of ME, or chronic fatigue syndrome, is “disgraceful”, according to one specialist in the field.

Charities will be holding a protest at the Senedd in Cardiff Bay on Wednesday to show a movie about the disease.

Jan Russell, from WAMES (Support Society ME and CFS Cymru), has called the lack of diagnosis and lack of advice on symptoms “a health and social care crisis, even a humanitarian crisis”.

The Welsh Government said “health boards in Wales are responsible for the healthcare requirements of their populations”.

‘Lack of understanding’ of chronic fatigue

Speaking on the BBC’s Eye On Wales program, Charles Shepherd, a medical advisor to the ME Association, said:

“From my experience with patients in Wales, many GPs are still very uncertain about how to diagnose this illness.

“They’re just as insecure about how to manage the illness.

“There are five adult services in Wales but none of them are led by a multidisciplinary doctor, and that is what these services should be.

“Overall, the situation in Wales is scandalous.”

Mistaken ME for depression

Emma-Jayne Lloyd, aged 39 and from Cardiff, has suffered from ME symptoms since she was 18, but only last year she was given an official diagnosis.

“Imagine rising in the morning with a hangover, flu and the worst  jet-lag you’ve ever had, all mixed up together,” she said.

“Then imagine that you get up every day and feel like that. That’s what ME is.

“The pain is all through the body, you are so tired and you’re so weak that you cannot get up, or dress, or try to make food – everything is difficult.

“Everything you do, you must think about, because everything causes pain, or can cause you to go back to bed and sleep.”

Two years ago Emma-Jayne had to stop her job as a teacher, and she does not drive now

For years, doctors thought she was depressed, and Ms Lloyd says that health workers are only beginning to understand ME.

She says that ME clinics and consultants are available in England, but there is no such provision in Wales.

“There’s nothing in the blood, so they all think it’s something mental,” he said.

“There is no medication, no consultants, no clinic here.

“If you break your arm or have cancer, you know that you can go somewhere and someone with expertise can talk to you – but there is no one with expertise in ME in Wales . “

‘Change is slow’

In 2014, recommendations were made to the Welsh Government on how to improve diagnosis at primary care level, as well as treating and managing symptoms.

An action group was set up in 2015 to work with Local Health Boards across Wales to make these recommendations active.

Owen Hughes, who chairs the action group, said “progress has been slow”.

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

“That is part of the role of the action group – to share good practice and ensure that everyone is able to access high quality information and services.”

What is ME?

Around 13,000 people in Wales suffer from ME (Myalgic Encephalomyelitis), or chronic fatigue syndrome (CFS).

70% of people with the disease are women – and it is more likely to hit people between their twenties through to their 50s.

The disease is usually triggered by a viral infection.

Symptoms include muscle tiredness caused by activity, often with pain, as well as neurological symptoms such as short-term memory loss and ‘brain fog’.

Patients can also have problems with balance, ability to find words and lack of temperature control.

There is no complete cure to the condition, but symptoms with early diagnosis and with the right advice can be improved.

#TimeForUnrestWales

 

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ME makes me grieve for my past life

Posted on 10/26/2018 by wames

BBC website, 24 Oct, 2018: ME makes me grieve for my past life

An ME sufferer says she “grieved for her past life” after she was diagnosed with the condition.

Millie Earp, 22, from Cardiff, was 17 when she was diagnosed with the chronic illness but says she has learned to accept the condition.

She now works in Techniquest two days per week, but spends the remainder of her time resting.

The situation for patients in Wales has been described as “scandalous” by the ME Association, with patients saying they have struggled to get the help they need.

Watch the video

#TimeForUnrestWales

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#TimeForUnrestWales in the Senedd

Posted on 10/26/2018 by wames

#TimeForUnrestWales in the Senedd – Wed 24 Oct 2018

Seven AMs accepted the invitation from Mark Isherwood AM to join people with ME and carers at an event in the Senedd, the home of the Welsh Government. More AMs expressed interest and sent their apologies.

The message:

  • ME wrecks lives and disrupts families
  • Too few GPs understand enough about neurological ME to diagnose accurately & in a timely manner
  • Lack of medical expertise in ME also leads to inappropriate treatment referrals and management advice, often leading to a deterioration in symptoms

MESIG, the Cardiff Support Group presented an excerpt from the award winning, and very moving documentary film Unrest. This was followed by the opportunity to hear ME stories from local people, and an update on the state of healthcare for ME and the campaign #TimeForUnrestWales.

People with ME are asking for:

  • Welsh Government commitment to urgently provide finance and direction to enlist medical expertise and create a national training and awareness programme on neurological ME for NHS Wales
  • A speedy response by the Cabinet Secretary to implementing changes following the 2018 Review of services
  • Health Boards to be held accountable and assisted to implement training and awareness improvements in order improve diagnosis, management and access to generic services

An S4C news team arrived before the event to film and interview a group of people with ME and their families, who were standing outside the Senedd with posters, giving a visible presence to the event.

Mark Isherwood AM & attendees

Assembly members:

Mark Isherwood AM – North Wales                   Julie Morgan AM – Cardiff North
Jane Hutt AM  – Vale of Glamorgan                   Jenny Rathborne AM – Cardiff Central
John Griffiths AM – Newport                               Hefin David  AM – Caerphilly
Vikki Howells AM  – Cynon Taff                          Adam Price AM – Carmarthen

Hefin David AM Caerphilly

Julie Morgan AM Cardiff North

Adam Price AM Carmarthen

 

John Griffiths M Newport East

Jenny Rathbone AM Cardiff Central

Vikki Howells AM Cynon Taf

 

 

 

 

 

 

 

Jane Hutt AM Vale of Glamorgan

Stephen Allen, CE of C&V CHC

Chris Roach, Public Health Wales

 

 

 

 

 

Also present:

  • Stephen Allen, Chief Executive of Cardiff & Vale of Glamorgan Community Health Council
  • Christine Roach, Public Health Wales, seconded to the Welsh Government

ME stories:

  • Deirdre Penny – parent carer of adult daughter with severe ME
  • Millie Earp – young adult with ME
  • Jon Vaughan – carer of fiancé with severe ME

ME Health & Social Care crisis in Wales – #TimeForUnrestWales

Jan Russell, Chair of WAMES & patient rep on the government’s All Wales Implementation Group, explained how the recommendations in the Welsh Government’s 2014 Task & Finish Group Report had been designed to give practical steps to help Health Boards improve healthcare for people with ME & Fibromyalgia. 4 years later, many have not been implemented by Health Boards and no HB has implemented the recommendation to train and raise awareness with GPs and healthcare staff.

Dr Nina Muirhead, is a surgeon, person with ME & lecturer at Cardiff Medical School. Nina outlined her hopes and plans for Cardiff to be the first university to include neurological ME in medical students’ education.

The speakers were followed by a lively discussion about why doctors and the NHS are reluctant to take ME seriously and what could be done about it. All contributions will be considered via the ME services survey, the All Wales Implementation Group (AWIG) and/or WAMES.

Photos by Tom Martin

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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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