WAMES supports NICE guideline implementation in NHS Wales

Graded Exercise Therapy and the PACE trial have raised their ugly heads again in an article by Prof Trudie Chalder and friends. They have launched a scathing attack on the ability of the UK health guidance organisation NICE to assess scientific evidence and patients  to understand their illness and assess the harm they have experienced from treatments.

‘Same old same old’

Unfortunately media outlets have taken up the story without researching the claims.  Many researchers and commentators over the years have exposed the shortcomings and lack of evidence of the claim that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) can treat ME/CFS. They are finding there is nothing new to say this time round. There is no new evidence to critique. What is different is a few more voices with no experience of ME/CFS have joined the chorus.

The patient voice – what we like about NICE guidance

People living with Myalgic Encephalomyelitis (ME) tell WAMES that they heaved a big sigh of relief when the revised NICE guidance was published in October 2021. It wasn’t perfect, but at last they recognised the description of their illness in the pages of the guideline.

The objectors say a ‘new definition of CFS/ME’ was created. It wasn’t new to us! Having become used to sceptical and disbelieving doctors there was cautious optimism that at last we might be believed.

WAMES can understand that past providers of GET and CBT will feel miffed they no longer have such a wide pool of patients to draw from, but why pursue a patient group that doesn’t wish to be courted? Why are they blindly refusing to accept research that supports Post-Exertional Symptom Exacerbation (PESE)?

If GET and CBT work for some patient groups, then it makes sense to seek them out and offer it to them, but those of us who know how our symptoms can become so much worse after all sorts of activity say LOUDLY “Leave us alone. Your GET and CBT will hurt us much more than it will help”.

WAMES joins the the World ME Alliance in writing to the Guardian

We were disappointed by the absence of quotes or input from individuals with ME in your recent article titled “ME/CFS guidance that discourages exercise is flawed, say researchers.” As advocates for the broader disability community, we firmly uphold the principle of “nothing about us without us.”

…it is crucial for readers to be aware that previous studies conducted by these researchers were rated as low or very low quality by Nice. This information adds an important context to their perspectives.

WAMES says: #ImplementNICEmecfs

NICE committee member comments on the draft version of the article:  Trial By Error: Usual Suspects Say NICE Made Eight Errors; Nonsense, Says Committee Member Adam Lowe

In the media:

Guardian: ME/CFS guidance that discourages exercise is flawed, say researchers

A NICE spokesperson said: “We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients. In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.

Irish news: ‘Shortcomings’ identified in chronic fatigue syndrome guidance’

Dr Charles Shepherd (person with ME/CFS) said: “The Nice Guideline Committee (of which I was a member) spent an enormous amount of time over three years reviewing all the evidence on CBT and GET from both clinical trials and from people with ME/CFS.

“It concluded that the clinical trial evidence for the use of CBT and GET was of very poor quality and that people with ME/CFS consistently reported that CBT was ineffective and that GET made their condition worse.

The Canary: The Guardian has thrown the ME community under the bus, using bias and misinformation

The Guardian used “chronic fatigue” in both the original headline and opening paragraph. This is not ME: chronic fatigue is a symptom, not an illness… It has since updated the article to use ‘ME/CFS’ and ‘chronic fatigue syndrome’.

… the entire article managed not once to include a patient’s voice – but did include a doctor interviewee claiming: Many patients are sensitive to the inference psychological factors such as stress may contribute to the condition and dismiss psychological treatments such as cognitive behavioural therapy.

This is something the majority of patients would argue is false – and gaslighting.

WAMES joins global support for ME/CFS NICE guideline

On 11th July, a new study was published in the Journal of Neurology, Neurosurgery and Psychiatry purporting to demonstrate flaws in the NICE ME/CFS guideline review process.

The World ME Alliance strongly rebuts these suggestions.

WAMES and 23 other member organisations are coordinating a global response to this study to demonstrate, on record, the unity of the ME community.

The study has been reported on in various media outlets, initially the Guardian. As a first step, Sonya Chowdhury, CEO of Action for M.E. and Co-Chair of the World ME Alliance, has sent a letter to the editor of the Guardian outlining our support for the NICE ME/CFS guideline. We also note that the arguments presented by these researchers have repeatedly found to be lacking, and the clear conflicts of interest that are not being reported in the press.

Dear Editor,

We were disappointed by the absence of quotes or input from individuals with ME in your recent article titled “ME/CFS guidance that discourages exercise is flawed, say researchers.” As advocates for the broader disability community, we firmly uphold the principle of “nothing about us without us.”

The NICE guideline review process included input from thousands of individuals, organisations, researchers and clinicians. The researchers whose views were presented in your article were granted additional space through an extraordinary roundtable, which consequently delayed the publication of the guideline. It is essential to acknowledge that their arguments have been thoroughly examined and repeatedly found to be lacking.

Moreover, it is crucial for readers to be aware that previous studies conducted by these researchers were rated as low or very low quality by Nice. This information adds an important context to their perspectives.

The World ME Alliance—a collaborative effort encompassing 24 national and international ME organisations across 17 countries—stands by NICE in their rebuttal of this paper.

The patient community is ready to move on, and is eager to see resources, funding and energy put towards research projects such as DecodeME and the You&ME Registry. These initiatives have been developed with extensive patient and public involvement and offer genuine hope to individuals living with this devastating disease.

Yours sincerely,

Sonya Chowdhury CEO Action for M.E. and Co-Chair World ME Alliance,

on behalf of the World ME Alliance and its 24 member organisations.  

ME the illness: “Mourning the life we’ve lost”

The Messenger family have translated the article about them Cyflwr ME: ‘Galaru am fywyd ry’n wedi’i golli‘ posted on Cymru Fyw.

“The harmful effect of ME on patients and on families is terrible”, says a father from Carmarthen who currently is walking 5 miles each morning at the break of dawn in order to raise awareness and try to get better medical treatment.

Rob Messenger’s son, Cerith, now age 30 has been living with severe ME since age 11 – he had to leave secondary school early in Year 7 and he has had to spend long periods of his life in bed in a dark room.

Currently, after his condition worsened, he is unable to walk, read, watch television or tolerate light and sound.

The least effort, physical or cognitive, can lead to post-exertional malaise – one of the chief symptoms of ME.

Some two years after Cerith had his diagnosis, his sister Eleri found out that she also had the illness.

“Dad carried me to bed every night”

“The whole thing has been awfully difficult for us and all the family”, said Eleri when speaking to Cymru Fyw.

“I was 15 at the time – looking forward to my GCSE year.  I’d suffered a number of infections but had kept going back over several years and in the end after one of them I didn’t recover, I just kept getting worse.

“I was like Cerith, very active, I was very happy in school, and looking forward to being part of the latest school musical show and moving up into Sixth Form, I’d been abroad on school trips to Italy and Ireland and had completed the Duke of Edinburgh Award expedition.

“But at the start of 2006 I became very ill. To start with I could walk a little with support to get from the settee to the toilet. But gradually I lost the ability to stand at all.

Dad had to carry me up to bed each night. There were times when I couldn’t hold a cup and had to be fed.

“I was in constant pain, sometimes I couldn’t speak and I had cognitive and sensory problems.

“From that point on it was impossible for me continue my education, which was a huge loss to me.

“I had to have a special bed, a wheelchair and a stair lift in the house. My friends were really great, but I couldn’t help but grieve for the life that I had lost. I longed to be able to socialise and to go to university.

“During these years, whilst Dad was at work, Mam was looking after Cerith and me at home – she was always trying to keep things as normal as she could in a completely abnormal situation, keeping us up with things that were happening, special days and celebrations, and helping us stay in touch with the world outside – and helping us to maintain hope.

“Over the years I gradually began to improve a little so that I could do more within what I would call my ‘energy envelope’ in order to avoid post-exertional malaise (PEM).

PEM means that every symptom gets worse – the pain, the heaviness and weakness, difficulties sleeping, standing, thinking and communication.”

“I still have to manage the illness every day which means a lot of planning beforehand for any activity and regular rest.”

“Shadow of the person I should be”

Eleri has now set up a business from home selling her own cards and during last year she married.

“It’s so important to raise awareness about the severity of the condition”, she added.

“It’s not always obvious from looking at someone how ill they are.

“I’m so fortunate to have a supportive husband who can work from home and so can help me during the day with things like preparing food and cleaning.

“I’m going to Tafwyl (https://tafwyl.org/) with a stall next week – which has involved a lot of planning.

My husband, family and friends are coming to help and I’ve had to book a hotel nearby in order to be close enough that I can go back and forth from the stall in my wheelchair.

“Despite everything we had a great wedding day. We had so much support from family and friends to make it possible – but the great sadness, of course, was that Cerith couldn’t be there.

“With regards to the future, people with ME have to completely rethink their aspirations – it’s hard to imagine how I could have children unless I improve significantly, for example.

People (with ME) often say that they feel like a shadow or a quarter of the person they would have been.”

Rob Messenger was head of department in a school in Tenby but he had to change jobs, go part-time and then retire early to help look after the children. He and his wife have only been away on holiday once since 2004.

Since the start of June he has been walking to the top of Paxton Tower hill at the break of dawn each day.

On the 100th day he will have walked 500 miles and climbed twice the height of Everest but the goal is to raise money for two charities which fund biomedical research into ME, and another which supports patients in Wales.

He is also encouraging sufferers of ME or Long Covid in Wales to take part in a genetics study – the largest ever in the world on ME

Wales is a complete desert

“It’s important to recognise how resilient and determined people have to be to cope with this illness which is so life-changing”, he said.

“Cerith, for example has been so severely ill that he has had to be fed through a tube and also he’s had to spend time in a hospice.

“He was a boy full of life, always kicking a ball and when very young reading books like Harry Potter, and he was very musical.

“But when he got ME he had to go back to reading Mr Men, one page at a time, that was the severity of the situation and how ill he was.

“Whilst there have been some specialist centres in England, Wales has been a complete desert in terms of services for patients with ME. There is no specialist consultant for the GP to turn to for advice”, added Mr Messenger.

“How can this be right – given how much impact the illness has on patients?”

“We as Cerith’s parents have to do the bulk of the coordinating between the various health workers who respond to his different needs because there’s no specialist who can take on this roll.”

“There’s a need for expertise that meets the requirements of the NICE 2021 guidelines on ME – guidance that identifies it as a chronic , complex , multi-system illness”.

In response a spokesperson on behalf of the Welsh Government said: “We understand the effect ME can have on the daily life of people and their families and we have extended the Adferiad (Recovery) programme to include people with ME and other conditions with similar symptoms.

“Our goal is to ensure that people who live with long term conditions have fair access to services and that the services improve the mental and physical health of people who live with ME.”

“Sun rise for people with ME”

Cerith and Eleri are amongst 13,000 sufferers in Wales but it’s difficult to know for sure the number because there has been insufficient research in the field and because the illness hasn’t been taken seriously enough, said Mr Messenger.

“ My hope is that through my journey I can raise more awareness. I start at an early hour each morning because that’s the convenient time – it’s impossible later in the day because of my caring responsibilities.

“During the walks I’ll be sharing some discussions with key people and posting them on-line.

“I’m enjoying the walks but I know I need to stay fit for the future – I’m 68 and I need to keep going for the family.

“Through seeing the breaking of the dawn each morning from the top of Paxton Tower hill, my greatest hope is that the sun will rise for patients with ME.”[1]

[1] A little difficult to translate this last sentence neatly. In Welsh it makes reference to a well known poetic saying, “daw eto haul ar fryn” i.e. “There will be sunshine on the hill / mountain again”….things will get better.

Urinary biomarkers for ME/CFS?

Although urine would be an easy sample to collect from patients this study found that research into its use as a biomarker for ME/CFS was inconsistent. Studies were limited in size, susceptible to variables, used differing methodologies and participant criteria. The authors thought urine could still prove to be a useful tool as a diagnostic tool however.

“Further conduction of urine-based studies using alternative methodologies with more stringent recruitment criteria may provide more understanding on the pathophysiology of and diagnostic potential of urinary-based biomarkers in ME/CFS patients.”

A systematic review and meta-analysis of urinary biomarkers in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), by Asher Taccori, Rebekah Maksoud, Natalie Eaton-Fitch, Maharshi Patel & Sonya Marshall-Gradisnik in Journal of Translational Medicine vol 21, no. 440 (2023)

Review abstract

Background:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multifactorial illness that affects many body systems including the immune, nervous, endocrine, cardiovascular, and urinary systems. There is currently no universal diagnostic marker or targeted treatment for ME/CFS.

Urine is a non-invasive sample that provides biomarkers that may have the potential to be used in a diagnostic capacity for ME/CFS. While there are several studies investigating urine-based biomarkers for ME/CFS, there are no published systematic reviews to summarise existing evidence of these markers.

The aim of this systematic review was to compile and appraise literature on urinary-based biomarkers in ME/CFS patients compared with healthy controls.

Methods:
Three databases: Embase, PubMed, and Scopus were searched for articles pertaining to urinary biomarkers for ME/CFS compared with healthy controls published between December 1994 to December 2022. The final articles included in this review were determined through application of specific inclusion and exclusion criteria. Quality and bias was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Case Control Studies.

A meta-analysis according to Cochrane guidelines was conducted on select studies, in particular, those that investigate urinary free cortisol levels in ME/CFS patients compared to healthy controls using the program STATA 17.

Results:
Twenty-one studies were included in this review. All of the studies investigated urinary-based markers in ME/CFS patients compared with healthy controls. The reported changes in urinary outputs include urinary free cortisol (38.10%), carnitine (28.6%), iodine (4.76%), and the metabolome (42.86%). In most cases, there was minimal overlap in the main outcomes measured across the studies, however, differences in urinary free cortisol between ME/CFS patients and healthy controls were commonly reported.

Seven studies investigating urinary free cortisol were included in the meta-analysis. While there were significant differences found in urinary free cortisol levels in ME/CFS patients, there was also substantial heterogeneity across the included studies that makes drawing conclusions difficult.

Conclusions:
There is limited evidence suggesting a consistent and specific potential urinary-based biomarker for ME/CFS. Further investigations using more standardised methodologies and more stringent case criteria may be able to identify pathophysiological differences with diagnostic potential in ME/CFS patients compared with healthy controls.

Watch IiME Conference talks now available

The 15^th Invest in ME Research International ME Conference 2023 – IIMEC15 – took place on 2^nd June 2023  near Cambridge, UK.

The theme was “An Update on Research into ME – Post-Pandemic – including aspects of long covid research“.  Researchers and clinicians and patients from four continents came together.

IiME has now published a report and videos of the presentation, which are freely available on their website and YouTube:

Opening of IIMEC15 and Status Update Norwich Research Park – Prof Simon Carding

Status of ME/CFS Research at NIH – Dr Vicky Whittemore

ME/CFS and Long COVID: Insights from Invasive Cardiopulmonary Exercise Testing – Dr David Systrom

Herpesvirus reactivation as a trigger for mitochondrial dysfunction in ME/CFS – Dr Bhupesh Prusty

Metabolic profiling and associations to clinical data in ME – Prof Karl Johan Tronstad

Rethinking the Role of Virus in ME/CFS and Long Covid – Prof Nancy Klimas

Long Covid to ME/CFS Transition – Prof Alain Moreau

Immune Abnormalities and Viruses in ME – Prof Maureen Hanson

Visits to severely affected Patients – Prof Jonas Berquist

Treatments in a Clinic for Severely Affected ME/CFS Patients – Dr Dag Storla

TREATMENTS – Toward uniform treatment regimen for ME/CFS – Dr Jesper Mehlsen

Functional Outcome Measures – Prof Kristian Sommerfelt

The Itaconate Shunt Hypothesis for ME/CFS – Prof Robert Phair

Establishing new mechanistic and diagnostic paradigms for ME/CFS – Prof Ron Davis

Conference Week Round-up – Prof Simon Carding

Watch the videos on YouTube

WAMES AGM 2023: hope for the future

Our annual business meeting on 17th June 2023 celebrated the first signs of hope that services for people with ME/CFS in Wales might be on the horizon. Many times over the years we have wondered if years of raising awareness about ME and calling for appropriate services might ever produce a positive result for our ignored community.

Service development

The unfortunate rise in the post viral illness of long COVID and the long awaited revised NICE guideline means that there is now a more receptive climate in the NHS and an authoritative roadmap for the future.

WAMES has been busy sharing with Welsh Government and Health Boards the needs and experiences of people living with ME, as funding has been allocated and plans are being made to include ME/CFS in health services.

Information sharing

Advocating for services is why WAMES was set up in 2001, but we quickly realised that families affected by ME in Wales also needed information, not just about our illness, but also about general services and ways to influence those services and our society, so we set up a website and newsletter. Our information sharing these days focuses on our news blog, helpline, twitter and Facebook, and we have recently added an e-newsletter and Instagram page.

Our website has been looking increasingly tired and dated so we launched a fundraising campaign which has got off to a good start.

The team

All this has taken place with a dwindling volunteer team. Just imagine what we could do with more help!

• Chair & Campaigns coordinator: Jan Russell
• Acting secretary: Tony Thompson
• Acting treasurer: Liz Chandler
• Youth & Care Officer, Media Contact & Helpline Coordinator: Sylvia Penny
• Volunteering Coordinator: Sharon Williams
• Communications Team volunteers: Jacob; Mia; Michelle; Caitlin

WAMES is different to many ME charities. We don’t exist to support each other and we don’t work for members and provide them with lots of services. Instead, we all work together to improve the quality of life for ALL people affected by ME in Wales. We do this with a small number of people and a limited budget.

All our volunteers have health issues and other commitments but we can all make a valuable contribution when working as a Team and sharing the workload.

Join us at this particularly exciting time for ME in Wales!

We need:

Treasurer; Secretary; WordPress volunteer (to help run the new website); Fundraising volunteers; Remote Office manager; Admin volunteers; Communications volunteers.

Get in touch:  sharon@wames.org.uk   jan@wames.org.uk

Help us…. Make a difference for ME in Wales!

gets? | WAMES (Working for ME in Wales)