HSE Clinical Practice Guidelines for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (Ireland)

[Tom Kindlon]

Yes, a good article . Thanks to James and Emily; they did a great job with their quotes.

I didn't understand this bit. Can anyone explain what is happening here:

The HSE said this weekend that it was developing a national clinical guideline for ME in collaboration with patient and service user partners, supported by the Department of Health.

“Currently there is no consistent approach to treatment of people with ME and management is based on treatment of some of an individual’s symptoms. The clinical guideline aims to address this,” a spokesman said.

“People living with ME may see doctors from several different clinical specialties, depending on the symptoms they experience and the relevant specialty into which those symptoms fall, eg neurology, cardiology and oral health. There are no specialist doctors within HSE services who manage the complex pathophysiology of ME in its entirety, and knowledge and experience of managing ME is variable.”

(I thought the mention of oral health in that quote from the HSE spokesman was slightly weird. I can't see a specialist doctor 'within HSE services who manages the complex pathophysiology of ME in its entirety' doing a spot of dentistry as required.)

I hope any HSE 'national clinical guideline for ME' is a supplement to the NICE guideline rather than an alternative to it.

I thought it could be worth setting up a separate thread on this.

These guidelines are separate to the NICE guidelines.

 

[Tom Kindlon]

https://www.hse.ie/eng/about/personalpq/pq/2024-pq-responses/april-2024/pq-19209-24-cathal-crowe.pdf

15th May, 2024
Deputy Cathal Crowe, TD
Dáil Éireann
Leinster House
Kildare Street
Dublin 2

RE: PQ 19209/24

To ask the Minister for Health the actions his Department is taking in relation to the delivery of health services and supports to those suffering with chronic fatigue syndrome; and if he will make a statement on the matter

Dear Deputy Crowe,

The Health Service Executive has been requested to reply directly to you in relation to the above parliamentary question, which you submitted to the Minister for Health for response. I have consulted with the HSE’s National Clinical Director for Integrated Care and National Clinical Advisor and Group Lead for Children and Young People (NCAGL C&YP) on your question and have been informed that the following outlines the position.

A Clinical Practice Guideline Group for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) was initiated under the HSE’s Office of the Chief Clinical Officer in 2022. The purpose of the Guideline Group is to facilitate the development of a clinical practice guideline to guide General Practitioners, Paediatricians and Adult Medical Consultants towards best practice in diagnosing and treating patients with these conditions.

Chaired by the National Clinical Advisor for Children and Young People, the Clinical Practice Guideline Group includes patient partners in addition to clinicians. The completed guideline would help inform health planning for patients with ME and CFS.
In order to develop this clinical practice guideline, it is important that there is adherence in the application and use of the HSE’s National Framework for developing Policies, Procedures, Protocols and Guideline (PPPGs) 2016 and its development cycle stages (available at: hse-national-framework-for-developing-pppgs-2016.pdf).

The HSE’s National Clinical Director for Integrated Care has commissioned a scoping exercise to ensure adherence to this HSE National Framework for developing PPPGs (2016) and to secure an agreed approach in developing the guideline, considering options available as part of this process.

It is envisaged that this proposed approach will be discussed with the Clinical Practice Guideline Group for Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).

I trust this information is of assistance to you, but should you have any further queries please do not hesitate to contact me.

Yours sincerely
____________________________
Anne Horgan
General Manager

 

[Tom Kindlon]

I believe the guidelines committee was due to start in November 2024.

The Irish ME/CFS Association was not contacted to suggest a member so we have no representatives on the committee.

 

[Evergreen]

Thanks for posting about this, Tom.

Well done to the MEAI for instigating this process. That's an achievement worth celebrating.

I'm concerned that patients will be represented by a group that thinks separate guidelines for ME and CFS are appropriate - I think patient input to the guideline could be taken less seriously as a result.

The Irish ME/CFS Association was not contacted to suggest a member so we have no representatives on the committee.

I think it's crucial that the Irish ME/CFS Association has representation on the committee. I know you weren't invited, but have you/someone else from the association contacted them to make sure this is rectified?

Is someone from the Irish ME Trust on the committee?

 

[Evergreen]

I think it's important to flag the Irish ME/CFS Association as wanting to be involved in the development of the guideline. I'll email you!

 

[Braganca]

ME Advocates Ireland also insist on the international consensus criteria. https://meadvocatesireland.blogspot...a & Primer for Myalgic Encephalomyelitis (ME)

We at ME Advocates Ireland (MEAI) advocate and lobby for the adoption and use of the International Consensus Criteria and Primer by the government health agency in Ireland, i.e., the HSE, including community services, medics and other healthcare workers, because these international documents are currently the best standard guidelines available and were written specifically about ME. Despite being a decade plus old the ICC and ICP remain relevant and exemplary. They are extremely useful especially given that the HSE has never developed nor currently has ME Clinical Guidelines.

We believe that the lack of consensus on using one set of agreed upon criteria worldwide is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research funds. It is the biggest roadblock to progress taking place with regards to many aspects of ME including the discovery of a single universal diagnostic tool and education on management and treatments. The lack of consensus has prevented ME making it onto medical school curricula resulting in delayed education among ME-aware medics not only in Ireland but internationally.

Our ongoing campaign promotes the adoption of these internationally accepted set of diagnostic criteria, i.e., the ICC and ICP, which are sufficiently rigorous to ensure correct diagnosis and management.

 

[Evergreen]

Overall, I like the diagnostic worksheet pages of the IC primer, i.e. pages 7, 8, 10, 11, 12. I would have loved a doctor to have filled that out for me - I think they'd have a great summary of how I am.

I gave the primer to many doctors for a few years.

But when it comes to the abnormalities, recommended assessments and treatments, I'm less keen. The evidence base for some of/a lot of those is not strong, and I'd be concerned that if taken at face value, a person whose tests keep coming back normal could be misunderstood as not having ME.

I think the HSE needs guidelines for all those who present with an ME-like illness, not just those who reach the ICC criteria. For example, if someone presents with 2/3 instead of 3/3 on the neurological or immune/GI/GU sections of the ICC, they still need care, and it should look like the care of someone who presents with 3 or more symptoms on those sections. Those are arbitrary cut-offs that aren't particularly useful in the clinical setting, but can be useful in research when you want to get a sample that isn't diluted by too many mild patients.

In the ICC, someone who doesn't quite meet the cut-offs is classed as "atypical ME". I'm not convinced about the usefulness of that category. It may often just identify those whose ME is mild, but still life-changing. If we had any info suggesting that treatment should be different for those above and below those cut-offs, it might be a useful category, but we're way off that point.

Despite ultimately being diagnosed with "classical ME" by a specialist, for years I was told by doctors that I was "atypical" because I was not getting better either spontaneously or with GET/CBT, and then because I was getting worse. It didn't help me at all to be told I was "atypical". It's just like someone saying "You're weird" and walking away. And it caused unnecessary concern for me and my loved ones.

 

[Jonathan Edwards]

For example, if someone presents with 2/3 instead of 3/3 on the neurological or immune/GI/GU sections of the ICC, they still need care, and it should look like the care of someone who presents with 3 or more symptoms on those sections. Those are arbitrary cut-offs that aren't particularly useful in the clinical setting, but can be useful in research when you want to get a sample that isn't diluted by too many mild patients.

I think it is simpler. The ICC criteria are just made up on the basis of various bees that the committee members had in their bonnets at the time. They have no validity for either the clinic or research. ME/CFS has nothing to do with specific neurological, gastroenterological or immune features. As I understand it the ICC were developed as a reactionary response to the reasonable CCC by people who still thought that 'ME' was a disease with neurological signs, or alternatively thought it was something like AIDS. I won't name names but it is easy to do.

I think the ME advocates have got this backwards. It is this clinging to a make believe concept of ME that produces the cynicism and disbelief and ensures that the medical profession will never be interested in educating its trainees in such a concept.

 

[Evergreen]

I think the ME advocates have got this backwards. It is this clinging to a make believe concept of ME that produces the cynicism and disbelief and ensures that the medical profession will never be interested in educating its trainees in such a concept.

I agree with you. It's counterproductive. And that's why I wouldn't give the primer to anyone now, and wouldn't want people developing the HSE guideline to think that all Irish patients want their condition called ME or think that they have abnormality X, Y or Z.

Cynicism and disbelief, however, comes regardless of what you call your condition.

Of the primer authors I'm familiar with, my impression is that most used to use the term CFS, and now use ME/CFS for what is described in the primer as ME. I don't think we need, or can have at this point, detailed agreement on the nature of "it" at this point, but we should be able to agree on a basic clinical presentation to whom guidelines would apply and how those people should (and should not) be treated.

They will likely look to the recent NICE guideline as a starting point.

 

[Evergreen]

It is this clinging to a make believe concept of ME that produces the cynicism and disbelief and ensures that the medical profession will never be interested in educating its trainees in such a concept.

And to be fair to patients, I think the cynicism and disbelief that patients face from the medical profession is what makes some of them "cling" to the concept of ME as described in the IC primer. This is a concept that says to them, "Yes, you are really ill, and here's why". Of course some will cling to that, when they're being told they're not ill at all or only ill because of false beliefs. The ME concept came from doctors. It seems entirely reasonable to many.

Healthcare professionals have been just as guilty of insisting on the "why" - in their case, mostly the cognitive behavioural model.

If we all forget about the "why" and just accept that we're ill and focus on what to do, e.g. commence tube-feeding for the person who is malnourished so they don't die, and don't torture them by insisting they're exposed to light or other things they can't manage, we can really change things for the better.

And fund the bejaysus out of research to figure out the "why".

 

[Evergreen]

As the National Director for Clinical Care, Dr Siobhan Ni Bhriain seems appropriate to lead the development of our guideline.

She describes her role as:

As National CD for Integrated Care, I lead 29 National Clinical Programmes across a range of specialities in Medicine, Surgery, Mental Health, Primary Care, Chronic Disease, Children and Young People and Older Persons. My role is to support integration across the programmes and to lead on other significant projects in the office of the HSE CCO, for example, clinical leadership for the Assisted Decision Making Act. https://ie.linkedin.com/in/siobhan-ni-bhriain-920326224

Integrated Care is defined here:

Integrated Care aims to join up our health and social care services, to deliver patient care that is safe, timely, efficient and as close to home as possible. Integrated care improves quality and outcomes and puts the patient experience at the centre of everything we do. It means changing the way that care is provided, so that people with complex needs can live healthier and more independent lives.
https://www.hse.ie/eng/about/who/cspd/icp/

I note that she is a Consultant Psychiatrist for Older People, on secondment to the HSE role since 2020. https://ie.linkedin.com/in/siobhan-ni-bhriain-920326224

 

[Tom Kindlon]

News from Ireland

“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)” by Dr Ros Vallings The HSE National ME Clinical Guideline (Ireland) update HSE Reply to the ME Community’s Open Lette…

meglobalchronicle.wordpress.com

The HSE National ME Clinical Guideline (Ireland) update

The HSE National ME Clinical Guideline development project in Ireland is still at the early stages but the work is now well underway. An agreed priority for the project is to involve people living with ME in Ireland in the development of the guideline, in addition to the five Patients and Service Users on the Steering Group. The HSE staff on the guideline project plan to engage with patients and others in the ME community in Ireland to:

– understand the challenges ME patients face;

– work with the ME community to create solutions which will meet their needs in acute and community services.

HSE Reply to the ME Community’s Open Letter Requesting a Protocol for Severe ME

The Chief Clinical Officer (CCO) of the HSE has replied to the ME Community’s Open Letter (Ireland) which many people across the globe had signed. Six members of the ME community in Ireland sent the signed Open Letter within a cover letter to the CCO on March 3rd on behalf of the ME community in Ireland.

ME Advocates Ireland (MEAI) followed up on that community letter by sending their own letter on March 10th to the CCO, HSE staff and others including Government Representatives, to endorse and support the community’s Open Letter and to support the efforts of the community’s almost year-long Open Letter campaign.

The six members of the ME community and ME Advocates Ireland (MEAI) received a reply from the HSE’s CCO, Dr Colm Henry, on March 28th. The important takeaway points and positive news in that letter is that: “the issues identified in your letter will inform the work on the [HSE National ME] guideline. Your letter will be added to the Steering Group’s agenda so the group can review and consider how best to incorporate the important points you have raised into the clinical guideline development process.”

And “When the guideline is completed, the process of implementation will begin to actively address many of the points raised.”

Please see the full reply via the link here

 

[Tom Kindlon]

Myalgic Encephalomyelitis (ME) - HSE.ie

www.hse.ie

1. HSE.ie
2. Clinical Design and Innovation
3. Myalgic Encephalomyelitis (ME)

Myalgic Encephalomyelitis (ME)​

Myalgic Encephalomyelitis (ME) is a serious, long-term complex disease that affects multiple body systems and can greatly reduce a person’s health and quality of life.

According to international estimates, ME affects between 1% and 2% of people, many of whom are likely to be undiagnosed. Both children and adults can be affected by mild, moderate, severe, very severe, or profound forms of ME.

ME has historically been described and named in inconsistent ways. Currently, there is no agreed Irish guideline for diagnosing, treating, or managing ME, and approaches vary worldwide.

In 2025, Ireland’s Health Service Executive (HSE) received funding to create the first HSE National Clinical Guideline for ME.

The new guideline will aim to improve understanding, diagnosis, treatment, and management of ME in Ireland, resulting in quality care for people living with ME.

The guideline will be informed by international evidence, models of ME care, clinical experts, and people with lived experience of ME.

The guideline will be useful for:

• Health and social care workers in community and hospitals services
• People with ME (of all ages and severity levels) and their families and chosen supports.
• Advocacy groups supporting people living with ME.
• Policymakers planning services and funding.

This website will provide updates on the guideline’s development and share progress reports and resources over time.

HSE Chief Clinical Officer

“Developing this ME clinical guideline is a vital step in ensuring consistent, evidence-informed care for our patients. It reflects our commitment to quality, safety, and clinical excellence.”

HSE National Clinical Director Integrated Care

“This clinical guideline represents a critical opportunity to address the long-standing gaps in care for people living with ME. By listening to the community and grounding our approach in both lived experience and the best available evidence, we aim to deliver care that is compassionate, informed and responsive to needs.”

Department of Health Principal Officer, Population Health Screening, Cardiovascular and Stroke Policy

“Developing a national guideline for Myalgic Encephalomyelitis (ME) will be a significant step forward in supporting those affected by this challenging disease. This process is firmly grounded in evidence, agreed ways of working and, importantly, shaped by the experiences and voices of people living with ME. The dedication of all stakeholders working together reflects our shared commitment to enhancing services and care for individuals with this complex illness.”

HSE National Director Operational Performance & Integration

“The development of the ME clinical guideline is an important step in ensuring accurate diagnosis, safe and effective treatment, and equitable, evidence-based care for people living with this complex and often misunderstood disease. Having patient and service users as genuine partners in this work will, in line with all of the evidence for co-design, lead to more effective, personalised, and respectful service incorporating patients’ and service users’ lived experiences.”

Patient / Service User

“As a patient advocate living with ME, I strongly welcome the development of a national ME Clinical Guideline. It is an essential and long-overdue step forward. For too long, people living with ME have endured inconsistent and inadequate care. This project represents meaningful progress toward accurate diagnosis, safer treatments, as well as empathetic and equitable support. What distinguishes this project is its respectful and inclusive collaboration with people living with ME, including those with Severe ME. By centring lived experience and embracing co-design principles, it offers a path toward care that is truly responsive, compassionate, and effective across health, social care, and policy settings."

Patient / Service User

"As a patient and service user living with ME, I have my own story and have had the privilege of hearing the stories of so many other people. I believe we are now in a very different place than at any time in the past."

This HSE National Clinical Guideline is dependent on your voices being heard at every step of the process as the outcome has to meet your needs and ensure you have access to health and social care services which evidence a comprehensive understanding of ME.

Together, we need to create ways to connect and communicate so that all who wish to use their voices are able to be included in a way which meets their functional capacity.

 

[Tom Kindlon]

Some good news:
Prof Brian Hughes
The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group

The process so far has been extremely progressive

I am hugely optimistic that a world-leading guideline will be produced

#pwME #MECFS

 

[Sean]

Excellent news.

Hope it goes well.