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.

Here's some background information from the ME Advocates Ireland website:
https://meadvocatesireland.blogspot.com/2022/09/news-from-hse-re-clinical-guideline-for.html

The Chief Clinical Officer is supporting the development of a Clinical Guideline for ME



A Clinical Guideline Development Group has been established to develop the Clinical Guideline in Ireland

[..]

1) How this was achieved



September 2018:

MEAI reported that after an independent investigation resulting in the Culliton/O’Malley Report the HSE received recommendations which were expected to bring change for those with ME by establishing a working group to develop a national guidance document for ME.



http://meadvocatesireland.blogspot.com/2018/09/



May 2019: An HSE ME Working Group began.

It was interrupted by Covid and did not reconvene after August 2020.



March 2021: MEAI Advocates continued to receive concerns from across the country.

Joan, Moira and Christine submitted a complaint to the CEO’s office about:



The continuing lack of national Clinical Guidance and knowledgeable care for those with Myalgic Encephalomyelitis, Adult and Paediatric services across all Hospital Groups and Community Health Organisations.



1st April 2021: The Chief Clinical Officer’s (CCO) General Manager acknowledged the complaint



May 2021: We began a series of comprehensive meetings about our complaint took place across many months.

We approached a number of people who recorded their experiences of the reality of life with ME so that we could share these with the CCO’s office.



We made clear to the CCO’s office that action was needed which resulted in change and improved evidence-based care in both acute and community services for those living with ME so that we receive the quality of care which the National Healthcare Charter commits to.



https://www.hse.ie/eng/about/who/co...ficerstoolkit/national-healthcare-charter.pdf

Whilst it has taken time, MEAI’s complaint and ongoing engagements with the CCO’s office since April 2021, in combination with Parliamentary Questions and letters from other groups in recent months, the result is the CCO has committed to creating a Clinical Guideline for ME using the HSE’s ‘PPPG Framework’ a recognised structured process for writing Clinical Guidelines and policies.

MEAI have repeatedly emphasised that the Clinical Guideline Group and the implementation process should commit to the following principles:

· That the Clinical Guideline Group will engage with patient representatives and the ME community to:

o understand the problems we face

o work with us to create solutions which will meet our needs in acute and community services.

· That staff training and information for staff, adults and children with ME will be developed based on the content of the Clinical Guideline.

· That the process to create and implement the Clinical Guideline to ensure improved Service User experience clearly evidences the patient public partnership at its best.

 

[Tom Kindlon]

Also from:
https://meadvocatesireland.blogspot.com/2022/09/news-from-hse-re-clinical-guideline-for.html

3) HSE letters about the Clinical Guideline





· Letter to inform you

· Letter to inform your Doctor and Health Professionals

------

By Email Only

DATE: 2nd September 2022

RE: Development of Clinical Practice Guidelines for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

FROM: Dr Siobhán Ní Bhriain, National Clinical Director, Integrated Care

CC: Dr Colm Henry, Chief Clinical Officer (CCO), HSE

Dr Ciara Martin, National Clinical Advisor and Group Lead (NCAGL) for Children and Young People, Clinical Design & Innovation, HSE

To Whom it may concern,

This letter is for those individuals living with Myalgic Encephalomyelitis (ME) in Ireland. We wish to let you know that the Chief Clinical Officer is supporting the development of a Clinical Guideline (CG) for patients with signs and symptoms of ME. The CG will also outline the pathway of care for those presenting to the health service with signs and symptoms of Chronic Fatigue Syndrome (CFS).

A Clinical Guideline Development Group (CGDG) has been established to lead on the development of this clinical guideline. This Group will be overseen by the National Clinical Director for Integrated Care. The Group will be chaired by the National Clinical Advisor and Group Lead for Children and Young People.

This guideline is in the early stages of development and once completed, the guideline aims to guide General Practitioners, Paediatricians and Adult Medical Consultants towards best practice in diagnosing and treating patients with these conditions. This is an important first step in development of guidance to support clinicians, patients and their families.

The CGDG will meet over the next few months to develop a draft guidance that will be presented at the HSE Clinical Forum. The HSE Clinical Forum will provide feedback and / or approval of the guidance document. Following approval, it will be circulated to all key stakeholders.

Kind regards,
Yours sincerely,
Dr. Siobhán Ní Bhriain, MRCP (UK), MRPsych., MCRN: 15579
Office of National Clinical Director, National Lead for Integrated Care, Clinical Design & Innovation

------
Very similar letter:

By Email Only

DATE: 2nd September 2022

RE: Development of Clinical Practice Guidelines for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

FROM: Dr Siobhán Ní Bhriain, National Clinical Director, Integrated Care

CC: Dr Colm Henry, Chief Clinical Officer (CCO), HSE Dr Ciara Martin, National Clinical Advisor and Group Lead (NCAGL) for Children and Young People, Clinical Design & Innovation,

HSE Dear Doctor,

This letter is for those individuals living with Myalgic Encephalomyelitis (ME) in Ireland. We wish to let you know that the Chief Clinical Officer is supporting the development of a Clinical Guideline (CG) for patients with signs and symptoms of ME. The CG will also outline the pathway of care for those presenting to the health service with signs and symptoms of Chronic Fatigue Syndrome (CFS).

A Clinical Guideline Development Group (CGDG) has been established to lead on the development of this clinical guideline. This Group will be overseen by the National Clinical Director for Integrated Care. The Group will be chaired by the National Clinical Advisor and Group Lead for Children and Young People.

This guideline is in the early stages of development and once completed, the guideline aims to guide General Practitioners, Paediatricians and Adult Medical Consultants towards best practice in diagnosing and treating patients with these conditions. This is an important first step in development of guidance to support clinicians, patients and their families.

The CGDG will meet over the next few months to develop a draft guidance that will be presented at the HSE Clinical Forum. The HSE Clinical Forum will provide feedback and / or approval of the guidance document. Following approval, it will be circulated to all key stakeholders.

Kind regards, Yours sincerely, Dr. Siobhán Ní Bhriain, MRCP (UK), MRPsych., MCRN: 15579 Office of National Clinical Director, National Lead for Integrated Care, Clinical Design & Innovation

 

[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 that ME Advocates Ireland would like separate guidelines for ME and CFS.
I'm not sure the current position of the guidelines committee.

Here is a post from ME Advocates Ireland outlining their position:

"Differences between Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)"

http://meadvocatesireland.blogspot.com/2023/05/differences-between-myalgic.html

Extract:
======
More here about CFS from the Hummingbirds Foundation for ME

List of characteristics associated with ‘CFS’

Gradual onset
Onset following overwork or stress
Onset following EBV infection (or other common viruses including flu, Ross River virus, hepatitis infections and so on)
Fatigue or exhaustion (as the defining or most severe symptom of the illness) or symptoms referred to as vague and ‘everyday’ type symptoms
Omission of the serious neurological and cardiac (and other) dysfunctions which define M.E.
Emotional state, personality type or psychological history associated with causing or prolonging illness
Short duration of illness and/or naturally resolving illness after a short period of time or illness which resolves or improves with exercise therapy, psychotherapy or antidepressant drugs (or similar)
Mild illness which cannot result in death


To see the differences between Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) see this comparison chart by the Hummingbirds Foundation For ME (US). The chart shows, despite what many people claim, that ME and CFS are not the same.

 

[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.

 

[Jonathan Edwards]

Here is a post from ME Advocates Ireland outlining their position:

"Differences between Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)"

That looks very unfortunate and ill-informed. There are no known serious neurological or cardiological dysfunctions that define ME. This harks back to Royal Free ME. There is no reason to link EBV to CFS and not ME. Suggesting that people with CFS have a 'personality type' associated with causing or prolonging illness is outright nastiness as far as I can see.

I hope someone on the committee has the sense to see this is entirely ungrounded and unhelpful.

 

[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?

 

[Tom Kindlon]

We have been on previous committees the HSE have had including one that ran from 2019 for a few years that led on to this process. But weren’t invited to this. I think there aren’t many patient representatives on this. Don’t know whether the Irish ME Trust are on this. They are closer to ME Advocates Ireland than we are (e.g. have financially supported some of their activities).

 

[Evergreen]

We have been on previous committees the HSE have had including one that ran from 2019 for a few years that led on to this process. But weren’t invited to this. I think there aren’t many patient representatives on this. Don’t know whether the Irish ME Trust are on this. They are closer to ME Advocates Ireland than we are (e.g. have financially supported some of their activities).

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