ME/CFS and Adferiad (Recovery) services

People in Wales, and further afield, have been expressing concern about plans to place ME/CFS services in existing Long COVID services. The Health Minister announced on the 14^th March that there would be additional funding to widen access to Adferiad (Recovery) services to

“better support people with conditions such as ME/CFS and Fibromyalgia to get a diagnosis, manage their symptoms and access rehabilitation services”.

The name confusion

It is important to know that the Adferiad Recovery programme set up by substance abuse and mental health charities is NOT the same as the Welsh Government Adferiad (Recovery) programme for Long COVID. Each Health Board has set up a long COVID service based on common goals of the Adferiad programme which has been assessed regularly. So why do they have the same name? A VERY good question!

Is linking ME/CFS with other conditions a good idea?

We have been assured many times over the years by the Welsh Government and Health Boards that there is NO money for dedicated services. It was also clear that there had also been little will within NHS Wales to champion appropriate services for ME. Whether we like it or not long COVID has shone a light on ME and many with long COVID also meet the ME criteria, boosting numbers considerably and therefore adding to the need for services. [Research suggests 40 – 54% of people with long COVID have developed ME/CFS.]

There is an overlap in both symptoms and underlying dysfunction in ME/CFS, long COVID and Fibromyalgia. WAMES believes that people with ME triggered by COVID deserve a better service, just as people whose ME is triggered by other viruses and causes deserve to be recognised and offered services.

Diagnosis

Accurate diagnosis is where all good healthcare begins, whether that is diagnosis of a condition or acknowledgement of a symptom of unknown cause, that is disruptive to daily life.

All Heath Boards tell WAMES they are encouraging use of the 2021 ME/CFS NICE guideline in primary care. We don’t know yet how successful that is.

This is where you can help

• Do you have a diagnosis? Is it recorded in your medical notes as ME/CFS?
• Is it coded in the notes using SNOMED or READ or ICD codes?
• If not, would you consider asking a GP if they agree with your suspicion that you have ME/CFS by checking it against the NICE guideline?

Until Health Boards know how many people there are living with ME in their area they can’t plan properly for services. They would probably be very surprised at how prevalent ME/CFS is these days!

Can a combined post-viral illness clinic work?

Only if everyone involved has a thorough understanding of the needs of each condition, are constantly updating their skills, if the pathways are clear, they take a patient-centred approach and there is appropriate management support for each condition.

WAMES has been asking Health Boards for their Service to include:

• Assessment and care and support planning by an ME/CFS specialist team – as outlined at NICE 1.5
• Managing ME/CFS and symptom management support – as outlined at NICE 1.11 onwards.

We believe that much that will help people with ME can also help people with other overlapping conditions. It would be churlish to refuse to share our hard earned knowledge! And maybe there are self-management approaches we can learn from others.

WAMES has met a number of health professionals throughout Wales who really want to push forward service development for ME/CFS but some have also observed that in their Health Board implementation of the full NICE guideline can only happen in stages, for a variety of reasons.

That is not ideal. However WAMES is keen to offer support to those willing to take the first steps and to keep speaking out where we believe service development continues to fail people with ME/CFS, to ensure the Welsh Government money really does begin to improve diagnosis, management and support for all with ME/CFS and PEM/PESE.

#Implement NICEmecfs      #LearnFromME

OI and CI in ME

Orthostatic intolerance and chronotropic incompetence in patients with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, by K Miwa in Circulation Reports 2023; 5: 55–61 [doi:10.1253/circrep.CR-22-0114]

Research abstract:

Orthostatic intolerance is a common symptom in ME/CFS, and the symptoms induced by sitting or standing can leave patients bedridden.

Chronotropic incompetence (CI) refers to the inability of the heart to increase its beat rate to a level that is proportionate to the activity being undertaken, or a reduced increase in heart rate during activity.

Previous studies have observed CI in ME/CFS patients. This study aimed to explore the role of POTS and CI in ME/CFS patients during orthostasis.

The recordings of 101 ME/CFS patients (International Consensus Criteria) who completed an active 10-minute standing test at least 3 times from July 2017 to December 2020 at the Miwa Naika Clinic (Japan) were included in this study.

This test involved recumbent rest for 5 minutes, and then standing with feet shoulder width apart for 10 minutes. Inability to reach 10 minutes was recorded as a failure, and postural orthostatic tachycardia syndrome (POTS), orthostatic hypotension or neurally mediated hypotension, were subsequently diagnosed depending on symptom and heart rate responses to the test.

CI was considered positive if a patient failed the test without POTS but, succeeded with POTS on other attempts.

The authors found that 13 participants completed standing tests with and without exhibiting POTS, whilst also completing and failing the test on different occasions. Of these patients, they were categorised as CI positive if test success occurred with POTS and test failure occurred without POTS being exhibited. Amongst these 13 patients, the authors found that 92% were CI positive, and 38% exclusively failed the test without experiencing POTS.

The authors conclude that these results demonstrate that the presence of POTS in ME/CFS patients is essential for the maintenance of orthostasis during 10-minute standing tests. The authors also conclude that some ME/CFS patients experience CI during standing tests, suggesting the presence of impaired sympathetic activation.

The WMEA engages with the WHO over disability health equity

Following the World ME Alliance’s letter to the World Health Organization (WHO) highlighting critical gaps in their “Global report on health equity for persons with disabilities”, we have met with officials to discuss our recommendations.

This was a positive discussion on the importance of including those with energy limiting disabilities in global health responses. We discussed the range and severity of disability experienced by people with ME and other energy limiting disabilities, and the impact this can have on access to healthcare.

The WHO is now working to produce a Guide for Action, to help countries implement the recommendations set out in the “Global report on health equity for persons with disabilities”.

The World ME Alliance will continue to meet with WHO officials as this guide is developed, to ensure people with ME and other energy limiting disabilities are considered throughout.

We extend our thanks to Darryll Barrett (WHO Technical Lead for Disability), Dr Tarun Dua (Head of the Brian Health Unit), Dr Nicoline Schiess and Kaloyan Kamenov for a productive meeting, and look forward to ongoing work together.

This meeting was attended by the co-chairs of the World ME Alliance, Sonya Chowdhury and Oved Amitay, along with Sian Leary, our Head of Advocacy and Communications.

WAMES is an active member of the WMEA along with 20 other organisations around the globe