Policies and Documents

Dec 2024

Minutes of AGM 11 December 2023

AGM 2023 Minutes Download

July 2024

Building an NHS that is there for Long Covid and ME

This is a policy briefing for the new Labour government that aims to prioritise healthcare improvements for people with Long Covid and ME/CFS. It draws on data from over 300 people and has been endorsed by 15 organisations including the ME Association.

September 2023

The ME Association Statement in Response to The Oslo Chronic Fatigue Consortium

The ME Association's position on ME/CFS is aligned with that of the National Institute for Health and Care Excellence (NICE) and the 2021 NICE Guideline on ME/CFS (NG206), the Department of Health and Social Care (DHSC) and the work that has gone into the 2024 Delivery Plan, and with what we have learned from the patient community in the last 43 years…

April 2022

The ME Association Children and Adolescents

ME/CFS has been reported in children as young as 5, and there appears to be a peak of onset around 13 to 15 years of age. This 6-page chapter has been taken from the 2022 Clinical & Research Guide and we review what is known about ME/CFS in young people and consider the research evidence.

November 2021

The ME Association Review of BACME statement on therapy delivered in ME/CFS Specialist Services and the new NICE Guideline

The ME Association review of the BACME statement and survey about CBT, GET, and the new NICE Clinical Guideline for ME/CFS. This was a survey of healthcare professionals involved in the delivery of care and support via ME/CFS specialist services.

The ME Association hopes that:

  • the new NICE clinical guideline and the recommendations it makes about the composition of secondary care referral services will result in all such services recruiting a physician to play a key role, preferably as clinical lead,
  • the guideline will prompt the commission of new ME/CFS specialist services so that people who need them will have local access to the very best clinical care and support,
  • existing ME/CFS specialist services will realign themselves to the recommendations in the new guideline and work together to provide an effective standard of personalised services across the UK,
  • BACME and the healthcare professionals involved in ME/CFS specialist services will work with us as a national charity and with local groups so that the patient voice can be heard and that we can help ensure the very best of clinical care and support for anyone who might be referred to them from primary care.

April 2021

The ME Association Statement on Exercise in ME/CFS and Long Covid

“The ME Association is not and never has been against exercise per se. What we have consistently been saying since publication of the current NICE guideline (2007) and the PACE Trial (2011), is that use of regimented and inflexible graded exercise therapy as a management approach for people with ME/CFS is wrong, ineffective, and can cause harm…”

October 2020

The ME Association's response to BACME position statement on the management of ME/CFS.

“BACME issued a position statement on the management of ME/CFS earlier this week and the ME Association believes it is important that we comment upon it.

“While the ME Association is prepared to give a cautious welcome to what appears to be a significant change to BACME’s stance on both the causation and management of ME/CFS, we still have a number of concerns and questions…”

These include:

  • Reference to “best available clinically effective treatments” when none currently exist for ME/CFS.
  • “Graded activity strategies” – are they just another name for graded exercise therapy?
  • is BACME still recommending what might be termed ‘flexible graded exercise therapy’? If so, this ought to be made clear.
  • The lack of reference to Pacing which is a safe and effective management approach based on patient survey evidence and patient preference.
  • Reference to ‘rehabilitation’ in the context of ME/CFS – despite the included definition from the World Health Organisation.

“Finally, far more clarification is required about the way in which BACME now regards activity and energy management, along with the use of GET and CBT, and how this will translate into practical patient management in the NHS hospital-based referral services for people with ME/CFS.”

July 2020

Dr Nigel Speight: Severe ME in Children

The Hon. Paediatric Adviser to the ME Association published an 8-page review about the presentation of severe ME/CFS in children. He considers the approach that should be adopted by doctors, and what can be done to help provide appropriate support and care.

April 2019

Forward ME and Oxford Brookes University Report on CBT/GET Patient Survey

This survey was commissioned by Forward ME following discussions between the Chair and Vice-Chair of the NICE Guideline Development Group, Members of Parliament and the Chair of Forward-ME.

It was designed by a steering group of Forward ME members and an independent research unit within Oxford Brookes University, Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS), was engaged to undertake the survey, collate, analyse and report on the response.

The ME Association helped fund the cost of the report. See also: Blog Post.

January 2019

Parliamentary briefing document for debate on Myalgic Encephalomyelitis in House of Commons that occurred on 24 January 2019.

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of M.E., supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of M.E. and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting M.E. families to unjustified child protection procedures.”

These issues and concerns are described in more detail in the attached briefing document that has been prepared and supported by national charities – who are members of Forward ME which is chaired by the Countess of Mar – who represent both children and adults with the disease.

October 2017

ME Association Review of SMILE trial

This randomised trial aimed to determine if young people with ME/CFS might benefit from standard medical care and the commercial Lightning Process. We produced a damning review of both the research and the promoted results, explaining why the trial failed to deliver what it promised.

June 2017

ME Association Review of GETSET trial

This randomised controlled trial aimed to demonstrate GET delivered remotely was able to improve physical function for people with ME/CFS. We explain why it didn't and why other aspects of this trial – and the therapy – should be treated with caution.

Diagnosis and Management in Young People: A Primer

This 61-page booklet was compiled by international experts including Dr Nigel Speight, Hon. Paediatric Adviser to the ME Association. It provides the information necessary to understand, diagnose and manage the symptoms of M.E. in children and young people.

May 2015

ME Association Illness Management Report on CBT, GET and Pacing

Details the ME Association position on the controversial graded exercise and cognitive behavioural therapies and explains why we support the activity management approach known simply as Pacing.

May 2015

ME Association Implementing the Care Act for people with fluctuating, long-term conditions

This briefing sets out local authorities’ key responsibilities under the Care Act in relation to people with long-term, fluctuating conditions with care and support needs.

May 2010

ME Association Managing my M.E.

What people with ME/CFS and their carers want from the UK’s health and social services. 4,217 people took part – making this the largest ever survey of patient and carer evidence on issues relating to ME/CFS management.

All research relating to ME/CFS and Long Covid can be found in the ME Association: Published Research Index.

It is a free online resource available to anyone.

The Index provides an A-Z of published research studies and selected key documents and articles, listed by subject matter, on myalgic encephalomyelitis, myalgic encephalopathy, and/or chronic fatigue syndrome (ME/CFS) and Long Covid.

You can use it to easily locate and read any research in a particular area that you might be interested in, e.g. epidemiology, infection, neurology, post-exertional malaise etc. or can search by author or study title.

Nov 2015: The Member/Non-Member Satisfaction Survey Report reveals the results from a member and non-member survey that sought peoples views about the ME Association. We received a great number of comments from the 159 members (and 107 non-members) who took part and this feedback has helped us to see what we are doing well and where we need to do better. It continues to be used as part of our ongoing strategic review.

Following upon the 2024 AGM, we thought that you would find it useful to have our replies to the many questions that were raised before, during and after the meeting. These are listed by subject matter. They will be added to when needed.

Question:

What is the charity’s response to the complaints about the Magazine’s Editorial on ‘Movement’?

Answer:

A separate Statement was issued by the ME Association before the AGM on this subject and this still stands.

Question:

Please provide a copy of all the policy and other documents that the charity holds

Answer:

The charity’s documents required by the Companies Act and by the Charity Commission are available to view either on our website (section D. Governance and also shown below) or from the websites of those organisations.

We also have a number of policies relating to the internal organisation of the charity and these are mentioned in our annual submission to the Charity Commission. These policies are for internal use only and are to ensure the staff and trustees have guidelines to follow when making decisions within the charity. If required, the Charity Commission and other regulatory bodies can call upon these policies in reviewing the charity and its compliance.

Question:

Will you be changing the Articles of Association to reflect the Charity Governance Code?

Answer:

We are committed to undertaking a comprehensive review of our current Articles. That review will look at the Code, the Charity Commission’s Model Articles and any other source of good practice. To this end we shall consult widely and transparently including recruiting an independent charity governance professional to advise the charity. We have the same aspiration of all our members, namely, to ensure that the ME Association is run to the highest standards and continues in its charitable mission.

Question:

Why has the ME Association so much money? Surely its role is to spend it to improve the life of people with ME/CFE?

Answer:

You are quite right. The ME Association has substantial capital reserves. This has been obtained, first, by the generosity and commitment of our members and supporters. Secondly, the commitment of our staff and trustees over the last 20 years. Thirdly, through the prudence of the board of trustees over that time.

However, the purpose of a charity, as you say, is to use its money for the furtherance of its aims and not to leave it in a bank account. The trustees are aware of this and some time ago set out a 5-year strategy to further the charity's objectives. To this end we looked at new projects that would benefit the lives of people with ME/CFS. We spoke about these at the AGM.

As the chosen projects come on stream, they will need financing, and we will use our reserves to do that. That will result in a substantial reduction of the reserves to the level that is appropriate for our charity and which level is guided by the Charity Commission’s recommendations on reserves. It sounds easy to spend money and it is. But to spend money wisely and bring about an improvement to the ME Community is hard. Potential projects need detailed planning and project management. Pilot schemes must be tried, staff recruited. We are always looking to find new ways we can help you. If you have a workable idea, then come to us and we will look at it closely and see if we can together make it work.

  • We have established a special projects team, led by a full time Special Projects Manager, and they are reviewing a selection of projects which require substantial funding. A feasibility study relating to the benefit and cost effectiveness of these projects is underway.

We intend to become more transparent about what we are spending our funds on in 2025 and are developing a year round communications programme informing you, our Members, about what we are doing.

Question:

Why are there four trustees that have been on the Board of the charity for more than 10 years?

Answer:

Because they have been re-elected by the membership over the years. The members recognised the hard work and their passionate commitment to the ME community. The trustees have grown the charity, making it a bigger, better organisation. There has, over the years, been a steady turnover of trustees with new trustees taking the place of those that have left. All trustees have to be elected by the members and it is their decision whether to elect or re-elect.

Our charity’s rules allow for up to 8 trustees and we only have 6 at the moment. Members or those who would like to become members, please come forward and apply to join us. We are open to applications to supplement the tremendous capability and experience we have across legal, information technology, marketing and communications, medical, scientific and business. With your experience of life, the willingness and ability to work each day within our team and those professional skills that you’ve acquired, but above all, bring your passion to improve the lives of people with ME. We are sure you will enjoy the role. Contact us to apply.

Question:

Why hasn’t the charity modernised but stayed stuck in its old ways?

Answer:

That was a valid criticism some years ago but no longer. In the last three years, the trustees have totally revamped the organisation of the charity. We now have Team Leaders who are responsible for everyday operational control. The teams are vibrant, full of new ideas. Times are changing. You only have to look at our Social Media output and our ME Connect services to see this.

SOCIAL MEDIA
  • The reach and impact of our social media team has increased rapidly over the last year. On Facebook, Instagram and X, we continue to inform and encourage dialogue throughout the ME Community and elsewhere. For the latest news and comment on ME/CFS, people come to us. We are constantly looking at new ways in which to connect with people with ME/CFS and those who influence how you, the patient, are treated and understood.
  • We have expanded our Communications Team with the appointment of two new members of staff to manage our digital platforms. We have over 70k social media followers reaching over 3.5m people and a million website users. We intend to expand our activity across other platforms; use more video content; become even more accessible; and make more platform specific content to reach more people.
ME CONNECT

This service was re-launched this year with the appointment of Katharine Leat in January. Phone, emails, and social media messaging all now fall under the same management. We identified there was scope for development and in the summer of 2024, the trustees approved a 12-month pilot scheme:

  • Increased opening hours.
  • Employed staff working alongside existing and new volunteers.
  • Freephone number.
  • Reduced response time for email responses.
  • Change of phone line service provider to improve efficiency and reduce running costs.
  • Reduced response time for email responses.

Now:

  • Four part-time staff have been appointed.
  • Eight new volunteers have joined the well-established team.
  • September 2024 the pilot scheme was launched.
  • October 2024 (first full month of pilot) recorded 300 calls answered, the highest number in a month to date. An increase of nearly 50% from the previous record.
  • A new training programme is being delivered for new staff and volunteers.
  • New phone line service provider ‘Call Handling’ will begin in February 2025:
    • Specialist provider to many charities.
    • Improved reliability and reduced costs to The MEA.
    • Additional safeguarding measures.
    • Calls received through a VCC removing the long-standing requirement for landline phones.
  • Research has been undertaken into the most appropriate platform for an online community forum.
  • New group of volunteers to begin training January 2025.
  • Ongoing skills development training programme throughout 2025.
  • An online community forum will be launched in 2025.

Question:

Why aren’t you doing more research. That’s where we want results.

Answer:

Yes, that is what we all want, and your charity is committed to finding a diagnosis and a cure. It’s why we are funding or considering funding just about every research group here in the UK that is carrying out biomedical research into the cause or management of ME – a total of 12 different centres or individuals.

  • The MEA’s Ramsay Research Fund RF funds is currently funding in 2024, or are considering funding in 2025, research costing well over £500,000. We pay all the basic running costs of the ME Biobank, which is part of the UCL Biobank, at the Royal Free Hospital in London. The ME Biobank supplies blood samples and anonymised clinical data from people with ME/CFS to research groups in the UK and abroad.
  • We are also funding post-mortem research in collaboration with the Manchester Brain Bank.
  • Money is going into research into mitochondrial dysfunction and metabolomics at the University of Oxford, including a new PhD position in 2025.
  • Money is funding physios for ME, including a pilot study on lactate levels in people with ME/CFS – University of Liverpool.
  • Under consideration is research into the underlying physiological cause of post exertion malaise.
  • There are two separate studies into diagnostic biomarkers at the University of Surrey and the University of Oxford.
  • We are funding the management of dysautonomia – orthostatic intolerance and PoTS study at the University of Leeds; a study into ME/CFS in pregnancy at the University of Newcastle and a clinical trial of a drug treatment, where the protocol has been agreed and contractual arrangements are in progress.
Forthcoming Research Initiatives
  • We are also discussing the possibility of contributing funding to a major new research study that will involve both Long Covid and ME/CFS and an epidemiological study – the total cost of which would be in excess of £1 million.
  • Before making any further major funding decisions we want to see whether there are any major developments in causation and management of Long Covid that could be applied to ME/CFS. Sadly, despite significant investment into Long Covid there haven't been any breakthroughs relating to either cause or treatment so far.
  • We also want to see whether there are any significant findings from the Decode ME study that provide new ideas for research into biomarker development or causation.

So you can see from the above that we are using substantial research funds to achieve the aim that we all seek, a diagnosis and cure for ME/CFS.

Question:

It’s all very well talking about future developments but what about “NOW”? What about us patients trying to cope with a medical system that doesn’t understand us or even, in some cases, rejects the NICE Guidelines on how we should be treated?

Answer:

This is one of the biggest complaints our members have. We want action too. It’s why we launched a project aimed at engaging healthcare clinicians and decision-makers to implement the NICE Guideline within their ME/CFS Long Covid services. In addition to ensuring implementation, we are striving to influence change within these services by providing the patients' voice through our surveys and working groups ensuring that lived experiences shape future improvements. To date, the HSC team has engaged with five ICBs (Integrated Care Boards) in England and four Service Leads in Wales to support this vital work. Our main focus has been on improving care for those with severe to very severe ME.

At the end of the pilot phase, we will evaluate the progress made and identify opportunities to expand the project into other areas of the country. This is likely to lead to a larger healthcare team in order to further strengthen the bridge between patients and healthcare services. By embedding healthcare expertise directly into the ME Association, we aim to create a sustainable and impactful approach to improving care for ME/CFS and Long Covid. Achieving this will require significant additional funding for at least another 5 years. This is why the capital reserves we hold are so important — they enable us to fund initiatives like this, which bring real, tangible benefits to patients now and in the future.

Question:

Why doesn’t the charity have a CEO?

Answer:

We believe that trustees offer a better way of running the ME Association. The trustees provide the leadership of the charity, giving it strategic direction and ensuring compliance.

CEO’s can be a mixed blessing and certainly not the only way to run a charity or any other institution. Beloved by Executive Recruitment Agencies and Management Consultants, CEO’s have not always proved to be the right answer. In both the charity and commercial fields, there have been numerous examples of failure. Many years ago, The ME Association employed a CEO. The result was that the charity almost folded but thanks to trustees and the membership it was saved and has grown ever since. The charity will always look at the option of using a CEO and we have amongst our staff several people who could do that job exceptionally well. But for the moment, the present way the charity works with ‘hands on’ trustees has proved successful. Change for change's sake is foolhardy, incremental adaptation is, we believe, the route to take.

Our Articles provide for a maximum of 8 trustees. Any larger and decision making becomes more diffuse and lengthier. Our trustees work alongside operational staff, which is unusual for a charity, but the system works well. Trustees do not just turn up every two months for a meeting and go away.

We advertise for new trustees within our membership (note , it is a requirement that trustees are members) and widen that search where there are no suitable applicants.

We are always welcoming new talents and innovation, and we hope that the wider ME Community will come forward with their ideas.

The makeup of our trustees vary from time to time and the ratio of male to female will change accordingly.  If you have talent and the passion to help people with ME/CFS then whatever protected characteristic you have will not matter. Equality within the ME Association is paramount.

The reasons why trustees resign are many and various. Disclosing those reasons in certain cases would involve the disclosure of personal data and we would be in breach of the Data Protection Act if we did so. We rarely end a trustee’s membership of the Board but the Articles of Association prescribe reasons for doing so. Most trustees resign because they have new work, family responsibilities or find that their own health requires them to rest and recuperate.

Question:

Where is the Chairman’s Report for 2024 and why was the AGM not open to the public?

Answer:

The report will be written after the end of 2024 in order that events during the whole year, such as the recent AGM, can be included. In the previous year we did prepare a Statement that was ready for the AGM in December of that year. But, on reflection, we think publishing the 2024 Statement early in the new year is the best route to take.

As to the AGM, this is an occasion for the membership to hear about the work of their charity and question the trustees. There is no requirement for the charity to have an AGM but the trustees believe it is useful to our members. It is very simple to join the charity and therefore attend the AGM. Information regarding the holding of our AGM has always been given in the charity’s magazine.

Question:

People have said that you have contracted out services to trustees without the consent of the Charity Commission and that the payments are illegal. Is that true?

Answer:

No. That is entirely wrong. The allegation has no foundation.

Our Articles permit the charity to enter a contract with a trustee to provide services to the charity. This is a common occurrence with charities.  Many do this and the Charity Commission recognises the value of such arrangements to charities. There are strict rules for this laid down by the Charity Commission, including provisions covering conflict of interest. Those rules, which appear both in our Articles and in the Charity Commissions requirements, have been fully complied with.

Please note that the ME Association does not employ a Director of Communications and that contracts issued in respect of either Campaigns or IT systems comply with our Articles and follow Charity Commission regulations.

Question:

Why don’t you tell the membership more about what you are doing and how you are spending the charity’s money?

Answer:

With our quarterly ME Essential Magazine, our weekly newsletter, our website and our social media channels, we inform, educate and campaign for all people with ME/CFS.

But, you are right and the feedback from the AGM was that we need to do even more and highlight the projects that will benefit us all and how we are spending our reserves We intend to do precisely that and have already embarked on that process. You will see this in the coming months.

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