Research review: Molecular hydrogen as a medical gas for the treatment of ME/CFS

Posted on 07/22/2022 by wames

Molecular Hydrogen as a medical gas for the treatment of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: possible efficacy based on a literature review, by Shin-ichi Hirano,  Yusuke Ichikawa,  Bunpei Sato,  Yoshiyasu Takefuji and Fumitake Satoh in Front. Neurol., 11 April 2022 [doi.org/10.3389/fneur.2022.841310]

 

Review article:

Conclusion:

Since H2 ameliorates mitochondrial dysfunction, we herein reviewed the literature for the anti-fatigue effects of H2 in animal studies and human clinical trials. The findings of the literature review suggested that H2 exerts anti-fatigue effects, and that these effects may involve not only the direct scavenging of mitochondria-generated ROS by H2, but also its antioxidant and anti-inflammatory effects through the regulation of gene expression.

Molecular hydrogen =H2  = dihydrogen = hydrogen gas

Since mitochondrial dysfunction is also involved in the etiology of ME/CFS, the literature review also suggested that the anti-fatigue effects of H2 in animal and human clinical studies indicate a possible ameliorative effect of H2 on ME/CFS. Since “long COVID” or “post COVID,” the “sequelae” of COVID-19, may be similar to ME/CFS, there is an urgent need to develop precise therapies and substances for ME/CFS. H2 gas may be an effective medical gas for the treatment of ME/CFS.

A possible mechanism by which H2 ameliorates mitochondrial dysfunction in ME/CFS patients.

Review abstract: 

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disorder that is characterized by fatigue that persists for more than 6 months, weakness, sleep disturbances, and cognitive dysfunction. There are multiple possible etiologies for ME/CFS, among which mitochondrial dysfunction plays a major role in abnormal energy metabolism.

The potential of many substances for the treatment of ME/CFS has been examined; however, satisfactory outcomes have not yet been achieved. The development of new substances for curative, not symptomatic, treatments is desired. Molecular hydrogen (H2) ameliorates mitochondrial dysfunction by scavenging hydroxyl radicals, the most potent oxidant among reactive oxygen species. Animal experiments and clinical trials reported that H2 exerted ameliorative effects on acute and chronic fatigue.

Therefore, we conducted a literature review on the mechanism by which H2 improves acute and chronic fatigue in animals and healthy people and showed that the attenuation of mitochondrial dysfunction by H2 may be involved in the ameliorative effects.

Although further clinical trials are needed to determine the efficacy and mechanism of H2 gas in ME/CFS, our literature review suggested that H2 gas may be an effective medical gas for the treatment of ME/CFS.

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Cwm Taf Morgannwg UHB say they do not offer GET for ME/CFS

Posted on 07/20/2022 by wames

Cwm Taf Morgannwg UHB is “aware of the revised ME/CFS NICE guideline”

 

WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME.

Cwm Taf Morgannwg University Health Board’s Chief Executive Paul Mears asked their Executive Director of Therapies and Health Sciences to respond.  Lauren Edwards shares her overview with WAMES:

 

“Your email raised queries in regard to our Health Board’s response to the recent publication of updated NICE ME/CFS Guidelines and I have linked in with key colleagues on this matter.

Whilst we do not have a dedicated ME/CFS service within CTMUHB, I have received assurance from colleagues within our core services that they are aware of the revised guideline. As you are aware, the guideline makes it clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be recommended in the management of ME/CFS.

Cwm Taf Morgannwg University Health Board provides primary, community, hospital and mental health services to the 450,000 people living in three County Boroughs: Bridgend, Merthyr Tydfil and Rhondda Cynon Taf. [CTUHB]

CTMUHB’s Long-Covid Rehabilitation Service (LCRS)

Your email quite rightly highlights the overlap in symptoms between ME/CFS and long-Covid. Within CTMUHB’s Long-Covid Rehabilitation Service (LCRS), we support and coach people with fatigue management through activity diaries and various strategies to help manage their energy levels throughout the day. We specifically do not include a physical rehabilitation element within our service, based upon our awareness of post-exertional malaise amongst the people that we see in our LCRS.

Welsh Government support request

In co-ordination with other Health Boards across Wales delivering long-Covid services, our CTMUHB LCRS submitted a case to Welsh Government earlier this year outlining how the services could be expanded to support people experiencing other post-viral syndromes and the additional resource that this would require. On this occasion, additional resource was not allocated to expand the remit of the LCRSs across Wales for 2022/23 but please be assured that this remains our ambition for 2023/24.

As you point out, the Health Minister has commented upon the possible expansion of community models to treat and support people with other long-term conditions and so we are hopeful that Welsh Government will be able to support this approach for the future.

Thank you once again for making contact on this important matter.”

WAMES would like to hear from anyone with ME/CFS in the CTMUHB area about the service they have received since the publication of the revised ME/CFS NICE guideline in October 2021. Please let us know if your GPs are aware of the new guideline and understand exercise intolerance and PEM, so we can continue to work for service improvement. #ImplementNICEmecfs     Contact jan@wames.org.uk

Read what other health boards say: Aneurin Bevan; Betsi Cadwaladr; Cardiff; Powys Swansea Bay.

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Swansea Bay UHB implements ME/CFS NICE guideline

Posted on 07/13/2022 by wames

Swansea Bay UHB implements ME/CFS NICE guideline

 

WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME. 

Swansea Bay University Health Board (formerly ABMU) covers Neath Port Talbot and Swansea areas. Responsibility for providing healthcare services in the Bridgend County Borough Council area passed from ABMU to the new Cwm Taf Morgannwg UHB in 2019. [SBUHB]

Swansea Bay University Health Board’s Chief Executive Mark Hackett shares their current and future plans for healthcare services for ME with WAMES:

 

Thank you for your email requesting information about changes people can expect from NHS services since the publication of the updated NICE ME/CFS guideline in October 2021. I’m happy to respond as follows:

Access, diagnosis and referral

Swansea Bay UHB

GPs will identify signs and symptoms of ME/CFS and will initiate relevant investigations to exclude any other causes. Patients with suspected ME/CFS are diagnosed by GPs using (since 2018) a diagnostic tool developed in conjunction with the Rheumatology Consultants in our Rheumatology Occupational Therapy Service. This tool has been amended in view of the updated guideline and the NICE implementation statement published on 12th May 2022, and should soon be available to GPs on the Welsh Clinical Communications Gateway.

Rheumatology is the study of rheumatism, arthritis, and other disorders of the joints, muscles, and ligaments. (OED)

As this diagnosis can have lifelong implications for patients, GPs often refer patients for confirmation of diagnosis and for reablement, rehabilitation, complex needs and ongoing management or to social care services. Our Rheumatology Occupational Therapy Service currently accepts referrals from consultants and primary care GPs for adults with a confirmed diagnosis of ME/CFS. Rheumatology colleagues’ advice, discussion and education enhances confidence among GPs in diagnosing ME/CFS, avoiding delays.

Any other health and social needs are being managed within primary care and referred into appropriate specialities/pathways. Some aspects of these patients’ needs e.g. lifestyle advice, nutrition, weight management, symptom control, given possible similar symptom presentation, are guided by Welsh Government to sit within Health Boards’ Long Covid services.

The SBUHB Rheumatology Occupational Therapy Service

The Occupational Therapy service is our only specific service for those with a diagnosis of ME/CFS. This is an adults-only uni-professional service, provided by a team which also sees a range of rheumatological conditions e.g. fibromyalgia, osteoarthritis, rheumatoid arthritis and hypermobility.

Occupational Therapy intervention ensures holistic, meaningful and realistic goals are established. The risks and benefits of physical activity and exercise are discussed with patients who want to incorporate or increase this in their daily routine.

Specific occupational therapy intervention is provided to address functional limitations through a focus on daily activities, roles and responsibilities meaningful to the individual, using a person- centred, self-management approach. Interventions are co-produced in line with patient- identified values, aims and activity tolerance limits.

Various options are available for people to access appointments, including phone calls or virtual and face-face meetings, and we are supportive and flexible in offering an alternative appointment when needed. If employment or education needs are identified, the individual is signposted to SBUHB work-based initiatives and third sector organisations that can support work and training needs. The service operates a waiting list but consistently meets the Welsh Government Referral to Treatment target of 14 weeks.

An occupational therapist helps people of all ages overcome challenges completing everyday tasks or activities – what we call ‘occupations’. Everything is focused on increasing independence and wellbeing. (RCOT)

There is no specialist clinical lead or team for physiotherapy provision, therefore no multi­disciplinary team assessments for ME/CFS are conducted, nor care and support plans completed. However, all members of the Occupational Therapy Team are aware of the recommendation for establishing an individual’s baseline and working within their energy parameters without attempting to exceed their limits. In the event of a patient’s evident psychological distress, they will be signposted to psychological medicine or mental health services as there is no specialist provision for psychological therapies for those with ME/CFS. Supporting families and carers’ needs are addressed as required.

Our other therapy services accept referrals for patients with this condition but they are managed within generic caseloads within multiple services e.g. persistent pain service, neurology or musculoskeletal physiotherapy outpatients. For example, the persistent pain service has accepted referrals for people with ME/CFS for a multidisciplinary service, however clinicians are not specifically trained in ME/CFS – they have relevant skills from working in pain services and can support people who have ongoing pain as part of their presentation.

The SBUHB Long Covid Service

This service has been developed in response to the needs of and demand from our local population. It involves several approaches with rehabilitation and self-management at the core, delivered through virtual group consultations, webinars, face-to-face rehabilitation meetings and/or via online resources.

Under the ’Adferiad’ programme, resources have been developed for Long Covid which may have value for other patient cohorts due to the nature of shared symptoms. These include a chronic fatigue workbook which will be made available to Secondary Care specialities and Primary Care. The funding of this programme is time-limited, with adverse implications for service development for other chronic conditions. We are currently not offering a combined referral pathway for ME/CFS and Long Covid as NICE distinguishes these as separate conditions.

Nevertheless, there have been discussions regarding the ME/CFS client group and others with post-viral and fatigue-related conditions, and possible integration with the Long Covid Service within our pulmonary rehabilitation and wellbeing services. For example, we are aware of the evidence with regard to PEM/PESE, and while it is noted that this is not mentioned in the list of symptoms, assessment and treatment from the Long Covid Service is tailored accordingly.

Service developments

The following service developments are in progress:

  • our training resources are being reviewed to ensure they reflect the NICE ME/CFS guideline and implementation statement
  • we are adopting flexible case-by-case support for ME/CFS patients who did not attend or were unable to attend appointments
  • the Occupational Therapy Team may currently refer patients to the out-patient physiotherapy service for exercise planning or to the National Exercise Referral Scheme, and will consider dietician referral where appropriate. Plans to further develop this referral pathway to dietetics are underway and resource identified, however there is no specialist provision in this development for the ME/CFS patient group
  • within the Long Covid Service we continue to develop educational resources, group consultations and webinars for common symptoms such as fatigue, breathlessness, muscle ache and low mood, and lifestyle advice on weight management, exercise, nutrition, mental health etc. We expect to widen referral to these resources to ME/CFS patients and others who present with these symptoms.”

WAMES would like to hear from anyone who has accessed healthcare for ME/CFS in the SBUHB area since the publication of the revised ME/CFS NICE guideline. We want to hear about the successes and the failures, so we can continue to work for service improvement.  #ImplementNICEmecfs

Contact jan@wames.org.uk

Read what other Health Boards say: Aneurin Bevan; Betsi Cadwaladr; Cardiff; Cwm Taf; Powys

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Ensuring the voice of the very severely affected ME/CFS patient is heard in research

Posted on 07/12/2022 by wames

Ensuring the voice of the very severely affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patient is heard in research-a research model, by  Helen Baxter

 

Research article abstract:

Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics.

It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require tube feeding. Due to the severity of their illness, these patients have largely been excluded from research and are often described as ‘hard to reach.’

A questionnaire was devised to gather data about their experiences of accessing tube feeding. By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers.

Conclusions:

Although patients with severe ME/CFS have often been excluded from previous research, due to being regarded as ‘hard to reach’, this study showed that if people with very severe ME/CFS are made aware that research is being undertaken, and the necessary support is provided, without time constraints, they can make invaluable contributions to research.

Recommendations to ensure high quality research in the form of a checklist for future researchers to follow:

  • Utilise organisations, charities and support groups, both locally and nationally, who know the demographics of their patients, or members.
  • Contact charities and other organisations to publicise an invitation to take part in research, both online and in print.
  • Liaise with charities to find out when they send members printed documents, such as magazines, and place advertisements in these, allowing sufficient time for potential participants to see the advertisement and respond to it.
  • When designing a survey, use simple language. Aim for a reading age of nine.
  • Ensure software is used which has a ‘save’ function to enable participants to complete and return the document, as and when their health permits.
  • Offer paper copies of surveys/questionnaires.
  • Offer assistance to complete the survey/questionnaire by telephone and, if possible, by text.
  • Look to recruit people with knowledge of severe ME/CFS to assist with completing documentation by telephone.
  • Speak slowly and softly when talking to people with severe ME/CFS and avoid having them repeat themselves. Read the participants’ responses back to them for confirmation that they are correct.
  • Make funders aware of the need for extended deadlines.

Read full article

Article in Healthcare 2022, 10(7), 1278; [doi.org/10.3390/healthcare10071278]
Published: 10 July 2022  (This article belongs to the Collection Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS))

See also:

MERUK: Research challenges in severe and very severe ME/CFS

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#WAMES_800 – How can I donate?

Posted on 06/28/2022 by wames

#WAMES_800 – How can I donate?

 

It has been great to receive enquiries asking how people can donate money to WAMES.

We would like be able to say that we can accept it in any format. In practice we would struggle to know what to do with cryptocurrency and we have just discovered our online donation service has ceased operation!

We are exploring how to expand our options and currently suggest:

  • Send the Treasurer a cheque or postal order
  • The online donation service we used in the past no longer operates so we are looking for a new one.
  • Please Gift Aid your donation
    If you are a UK taxpayer, every £1 you give will be worth 25p more to us, at no extra cost to you, if you Gift Aid it. You can download the Gift Aid form.
  • Donate when you pay online with PayPal – select WAMES
  • If you live close to a WAMES official, drop an envelope of cash through their door!
  • By bank transfer or standing order.     Account name:

Welsh Association of ME & CFS
Account Number:  76392081
Sort Code:       09-01-55

  • We are exploring other possible donation methods, such us FB, twitter, texting but it will take time to set those up – maybe you can help us do that?

Find out more:

#WAMES_800 fundraising journey – Join us!

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 Fundraising Journey – First £100 target reached! 

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Research: Clinical characteristics of ME/CFS diagnosed in patients with long COVID in Japan

Posted on 06/28/2022 by wames

Clinical characteristics of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) diagnosed in patients with long COVID

 

16.8% of long COVID patients at a Japanese outpatient centre met the ME/CFS criteria, 51.1% were female. Main symptoms were fatigue and PEM, followed by headache and insomnia. To get a fuller picture symptoms would need to be tracked over a longer period of time and housebound patients included.

 

Research abstract:

Background and Objectives:

COVID-19 can be serious not only in the acute phase but also after the acute phase and some patients develop ME/CFS. There have been few studies on patients with long COVID in whom ME/CFS was diagnosed by physicians based on standardized criteria after examinations and exclusion diagnosis and not based on only subjective symptoms. The purpose of this study was to elucidate the detailed characteristics of ME/CFS in patients with long COVID.

Materials and Methods:

A retrospective descriptive study was performed for patients who visited a COVID-19 aftercare clinic established in Okayama University Hospital [Japan] during the period was from February 2021 to April 2022.

Results:

Clinical data were obtained from medical records for 281 patients, and 279 patients who met the definition of long COVID were included. The overall prevalence rate of ME/CFS diagnosed by three sets of ME/CFS criteria (Fukuda, Canadian and IOM criteria) was 16.8% (48.9% in male and 51.1% in females).

The most frequent symptoms in ME/CFS patients were general fatigue and post-exertional malaise (89.4% of the patients), headache (34.0%), insomnia (23.4%), dysosmia (21.3%) and dysgeusia (19.1%). Dizziness, chest pain, insomnia and headache were characteristic symptoms related to ME/CFS.

The male to female ratio in ME/CFS patients was equal in the present study, although ME/CFS was generally more common in women in previous studies. Given that patients with ME/CFS had more severe conditions in the acute phase of COVID-19, the severity of the acute infectious state might be involved in the pathophysiology of ME/CFS.

Conclusion:

The prevalence rate of ME/CFS and the characteristic sequelae in the long COVID condition were revealed in this study.

Authors: Kazuki Tokumasu; Hiroyuki Honda; Naruhiko Sunada; Yasue Sakurada; Yui Matsuda; Koichiro Yamamoto; Yasuhiro Nakano; Toru Hasegawa; Yukichika Yamamoto; Yuki Otsuka; Hideharu Hagiya; Hitomi Kataoka; Keigo Ueda and Fumio Otsuka

Journal: Medicina 2022, 58(7), 850; [doi.org/10.3390/medicina58070850]  Published: 25 June 2022 (This article belongs to the Special Issue Advances in ME/CFS Research and Clinical Care)

 

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#WAMES_800 Fundraising Journey – First £100 target reached!

Posted on 06/28/2022 by wames

#WAMES_800 Fundraising Journey is underway

 

A big thank you to those who have helped us begin our journey.

We have climbed the first step to our target of £800 for next year’s.

The £100 milestone has been reached, only £700 to go!

 

 

Every little helps

£800 might seem a large target to people with little energy and disposable cash. There are 13,000+ people with ME in Wales. If just 1,000 of those donated or raised £1 a year we could easily cover our running costs. If more were to give £1 we could begin to carry out additional projects. Every little helps!

Find out more about our Fundraising Journey:

#WAMES_800 fundraising journey – Join us! 

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 – How can I donate?

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Cardiff & Vale UHB plans ME/CFS service improvement

Posted on 06/21/2022 by wames

CVUHB plans to implement ME/CFS NICE guideline

 

WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME. 

Cardiff and Vale’s University Health Board’s Chief Executive Suzanne Rankin shares their plans for improved care for ME with WAMES:

@cardiffandvaleuhb

 

“As a Health Board the new NICE guidance for ME/CFS have been shared widely across services which support people with ME/CFS and long COVID. Clinicians supporting people with ME/CFS, long COVID and other long-term conditions recognise the concept of energy impairment linked to symptom exacerbation (and strive to embed the awareness within their Treatment and clinical interventions with individuals).

We have a meeting planned between the Executive Directors for Medicine, Nursing and Therapies and Healthcare Sciences to review our current ME/CFS clinical pathway and our services against the recent NICE Guidance.

Training for staff

The UHB has a Rehabilitation Improvement Programme which is focusing on how we can develop our rehabilitation services to ensure we support people with long term conditions to have better access to the help that they need, when they need it. The Rehabilitation Programme is developing ‘A Meaning Full Conversation’ Model of Care which aims to provide education and training across the rehabilitation workforce to support people with advice and strategies to manage common symptoms which may be out of their usual scope of practice. Fatigue, pacing, energy management and post exertional symptom exacerbation forms part of the model.

Rehabilitation services

At a service level we continue to develop our rehabilitation services to ensure we provide people with the education and strategies to support them to manage symptoms including fatigue. This is delivered individually and within a group setting. The group-based interventions help to facilitate peer support and learning from others with similar experiences, and service users have reported that the sessions have been very useful in helping them develop energy management strategies.

Leisure classes

We are also working in partnership with leisure to support us to deliver care nearer to people’s homes. We have trained leisure staff to develop classes and activities to support people who have long-term conditions, and to increase their awareness of common symptoms including fatigue and energy impairment presentations, to help them have the skills and knowledge to work with people and support them to return to increased levels of activity if this is their goal.

Co-production for long-term conditions support

As you are aware, we have also established co-production meetings bringing together people with lived experience of a long-term conditions, health professionals, third sectors and organisations across Cardiff and Vale to work together to ensure we are meeting the populations needs. Representatives from The Welsh Association of ME & CFS Support have attended both events to date and we have really valued their insight and contribution to the meetings.

COVID services

As we recover and reset from COVID as a Health Board we are focused on improving the health of whole population and supporting people with long term conditions to get the help they need. We are currently considering how we can develop our COVID service to broaden its access to a number of conditions including ME/CFS.

Do be assured we will keep you involved and look forward to progressing this.”

WAMES would like to hear from anyone with ME/CFS living in Cardiff and the Vale of Glamorgan about the service they have received since the publication of the revised ME/CFS NICE guideline in October 2021, so we can continue to work towards improving those services. #ImplementNICEmecfs   Contact jan@wames.org.uk

Read what other Health Boards say: Aneurin Bevan; Betsi Cadwaladr; Cwm Taf; Powys; Swansea Bay.

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#WAMES_800 Fundraising volunteers needed!

Posted on 06/21/2022 by wames

#WAMES_800 Fundraising journey – Can you help?

 

As WAMES travels along our 8 month fundraising journey we are looking for people with a range of skills and interests to join us.

Help us to climb the first column to our fundraising target!  Any help with raising funding and spreading the word would be welcome, but we would also like help with:

  • Expanding our ability to reach people through social media and online platforms
  • Identifying novel and ‘free’ ways of getting funding like match funding and crowdfunding
  • Interesting businesses in corporate fundraising
  • Researching funding options and writing grant applications

WAMES fundraising volunteers work from home with support from our Volunteering Coordinator and the Finance and Communications Teams.  You decide the number of hours you can offer and all volunteers representing WAMES are covered by insurance. Want to know more?

Download more information

Contact Sharon to arrange a chat   sharon@wames.org.uk

Find out more:

#WAMES_800 fundraising journey – Join us! 

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising Journey – First £100 target reached! 

#WAMES_800 – How can I donate?

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ME/CFS Research Priorities Report 2022 welcomed by UK Government

Posted on 06/09/2022 by wames

ME/CFS Research Priorities Report 2022

 

During 2021 and early 2022 thousands of clinicians, patients and carers throughout the UK worked together to identify areas of ME/CFS that need to be researched. An ME/CFS Priority Setting Partnership (PSP) was set up to determine what should be prioritised.

 

Over 5,300 ideas for research were submitted, then they  were prioritised.  On World ME Day, May 12th 2022 the final report with the top 10+ research priorities was published.

“Now that we have the Top 10+, researchers, funders and government must work with people with ME/CFS to produce the highest quality research into these areas, and continue to prioritise ME”

Gemma Hoyes, PSP steering group member

 

The UK Health Secretary responded positively and held a meeting on the 9th June 2022 to discuss ME/CFS research with researchers, charity and patient representatives, representatives from the government bodies who fund research (MRC, NIHR), and with Professor Lucy Chappell – the DHSC Chief Scientific Advisor.

“I welcome the publication of this Priority Setting Partnership which sets out the Top 10+ research priorities for ME. The Government recognises that ME is an under-researched area and pledges to support research funders and the academic community to respond to this independent report.”    The Rt Hon, Sajid Javid, MP, UK Secretary of State for Health and Social Care

Read or Download the report or listen to the Top 10+ priorities

Spread the word with these resources to tell people who have the power to make research happen.

Priority 1

What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?​

Priority 2

Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?​​

Priority 3

How can an accurate and reliable diagnostic test be developed for ME/CFS?​

Priority 4

Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?​​

Priority 5

Are there different types of ME/CFS linked to different causes and how severe it becomes? Do different types of ME/CFS need different treatments or have different chances of recovery?​

Priority 6

Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?

Priority 7

What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?​

Priority 8

Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?

Priority 9

What causes ME/CFS to become severe?​

Priority 10

How are mitochondria, responsible for the body’s energy production, affected in ME/CFS? Could this understanding lead to new treatments?

Priority 10+

Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?​

The process

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