Research and healthcare must involve people with M.E. to move forward

STOP COLLABORATE AND LISTENThere’s a gaping chasm between what’s provided and what people with M.E. need. From where I’m sitting, as a patient first and health professional second, the only way to get what we need is to collaborate. In this blog I show the ways patients are becoming more involved in research and healthcare.

Apologies for the length of this blog post. You can skip straight to the sections if you like:


People with M.E. feel abandoned in the health system wilderness and we need to find our way into the NHS. I’ll be writing more about my observations as patient and pro in a future blog post, but both “sides” are guilty of making the situation worse. Although we’re understandably very angry about being neglected and mistreated as a patient group, there has to come a point where we engage with the research and health organisations because they’re the ones who provide the things we need. We’ve all been through a lot of hurt but they need to stop being “the enemy” and start being our partners in achieving what we want for people with M.E. As the saying goes, if you can’t beat them, join them!

There’s now a big push for collaboration, involving patients as equal stakeholders in the design of research and healthcare in general, and this is known as patient and public involvement or sometimes as patient engagement. There are lots of opportunities for this now in the UK, as it’s an integral part of the NHS Five Year Forward View  and we can join in with many of these opportunities from home. In the case of M.E., we’re really waiting for research and healthcare to catch up with what we already know as patients, and our needs are obvious to us. The research and health organisations are now saying, “OK , we’re listening, tell us what you need”.

The idea of involving patients shouldn’t really be rocket science. It’s about us, so why not just ask us? I know people are sceptical of calls for us to have our say, and for quite some time this just looked like trendy corporate lip-service, bolted on as an afterthought to get a box ticked that they’re including some token patients, instead of a genuine intention to learn from patient knowledge and experience.

Patient involvement is proving to be very productive in other illnesses and long term conditions though, when it’s done well. Here are some of the ways patients are involved in general research and healthcare to see how we could use the systems already in place to get the change we need for people with M.E.

Patient and public involvement in research

Research conferences

An article published in the BMJ gives a history of the progress achieved through collaborative conferences. The first one of note was the 8th international AIDS conference in 1992, and others include conferences for rheumatology and neurology conditions. The authors identified four pillars of successful collaboration at conferences:

  • Accommodation of the needs of patients, such as medical, nutritional, financial, and accessibility needs
  • Codesign so that patients are placed on an equal footing with programme creators to identify conference themes, select speakers, and evaluate abstracts that relate to patient centred issues.
  • Engagement of patients as speakers and in the audience
  • Education and mentorship to increase patients’ confidence in participating

Read the BMJ article Nothing about us without us”—patient partnership in medical conferences

MRC, NIHR, ME Research UK, AYME, ME Association, Action for M.E.
Patient and research organisations in the CMRC

The UK CFS/M.E. Research Collaborative (CMRC) conference is a great opportunity to find out about the research taking place going on around the world and to participate in steering our future. I went last year and it was so uplifting to focus on the future of M.E. biomedical research. Patients took part in round table discussions with researchers and health professionals to share our experiences of diagnosis and what we think could have been better.

Obviously, it’s difficult for a lot of people with M.E. to attend because of our health. Live streams and recordings of talks are a way of people with M.E. getting to see the research going on for ourselves. The conference was live-streamed and there’ll be YouTube videos soon. Find out more about the UK CMRC and this year’s conference

Research design and patient-centred treatment outcomes

Involving patients in research design is recognised as important to identify new topics for research and ensure that topics are relevant to patients, carers and members of the public. There are several ways we can suggest new research and become involved in its design and some of these are online discussions and surveys. Watch a video and find out more from the National Institute for Health Research

At last year’s CMRC conference one of the other discussions involving patients was about patient reported outcome measures (PROMs), where patients told researchers what outcomes they’d like from treatments and how these could be measured.

Taking part in studies

You can find out about being a participant in research studies on the NIHR site . One of the obvious difficulties with M.E. research is that we’re often too ill to participate in studies in person, so the research organisations need to make this easier for us to do remotely. Here are some ways of finding out what you could participate in:

  • Look out for opportunities publicised by the M.E. charities and research organisations on their Facebook pages to be involved in person or online.
  • Citizen Scientist is an organisation “building bridges to connect public and research communities, improving access to health research information, studies and volunteer opportunities”. Visit their site and follow them on social media
  • We all go online and talk to each other about how we are, what we find works and what doesn’t, so why not do this in a way which can be used as research? Patients Like Me is an online forum to share experiences of illness and treatments with other patients. This wealth of information, or data, can then be mined by researchers to develop better treatments and services Find out more about Patients Like Me

Journal articles and peer review

Here’s a great example of people with M.E. and researchers working together to write research articles. Phoenix Rising forum was used to collaborate on a paper which summarises the current state of M.E. research and what needs to be done next. Read The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem

In 2014, the British Medical Journal (BMJ), the main journal for UK doctors, launched its campaign for patient partnership and co-production of the journal . The campaign includes the BMJ asking researchers to co-author with patients, having a BMJ Patient Editor for the journal, patient blogs , and including patients in its peer review process prior to publishing research papers. To find out how their campaign is going three years on from its start, read Co-creating health: more than a dream

“I really am impressed by the BMJ’s patient involvement work.  No tokenism!  I applied and was accepted as a patient peer reviewer recently.  My views have the same status as those from ‘experts'”  – Cathy Stillman-Lowe

Patient and public involvement in healthcare

National Voices has established six principles of patient and public involvement in healthcare. These include person-centred care and involving patients and charities in the design of services to narrow inequalities in patient groups. I think it’s safe to say that people with M.E. suffer from health inequalities, so this section looks at how we can get involved to tackle these inequalities. Find out more about the six principles

Read a report by the NHS Confederation: Public and patient partnerships: How they can address the inequality and finance gap in health and care

Healthcare education and professional standards

Health Education England  is a non-departmental government body, separate from the Department of Health. It works with local education providers such as universities, to make sure health professionals have the right skills, values and behaviours train health professionals. The standard of education for health professionals and their professional standards are monitored by their regulators:

It’s been very clear from my viewpoint as patient and pro while writing the pharmacy resource, that patient consensus and mainstream medical literature differ wildly, so it was important to me to involve patients in the development of the resource for pharmacists about M.E. with Action for M.E. Patients and the charities are following the research much more closely than their generalists in primary care have the time to because it’s shared out between so many long term conditions, so it makes sense to involve patients and patient organisations in educating health professionals. I don’t know of any opportunities to become involved in healthcare education in the UK at the moment but I will add them if there are any suggestions.

NHS policy

The NHS recognises the importance of patient and public involvement as key to achieving better care for patients. NHS England is the non-departmental public body, separate from the Department of Health, responsible for health policy in England. The other countries in the UK have their own equivalent. Decisions about local health services are now devolved to your local area, so see Designing and improving local services below. Find out more about the work of NHS England and their current surveys and consultations


In England, the National Institute for Health and Care Excellence (NICE) involves ‘stakeholders’ (specialists, patient organisations and patients) in the development of guidelines for the treatment and management of health conditions. Stakeholders are then consulted again when the guideline is up for review. Their Get involved page gives twelve ways the public can influence the work of NICE. Obviously we have issues with the NICE CG53 for CFS/ME and I’ll be talking more about this in a future blog post but for now I recommend having a look at the guidelines, and reading my blog post Making decisions about our health

In Scotland, guidelines are created by the Scottish Intercollegiate Guidelines Network (SIGN) and they have developed Scottish Good Practice Statement on ME-CFS .

Designing and improving local services

How your local services are run is now controlled locally by Clinical Commissioning Groups (CCGs), rather than by the Department of Health or NHS England. Each step of the patient journey should involve patients in its design, which is known as co-production. Some local M.E. support groups actively engage with their local CFS/ME service by having meetings about what patients want to see. See how you can get involved by finding your local support group on Action for M.E.’s website

Here are some ways of finding out how you can shape health services in your area. Visit their websites, follow them on social media, and sign up to their e-mail newsletters to find out opportunities to get involved:

  • Most GP surgeries and other local services, such as CFS/ME services, have patient reference groups who give feedback and feed into local policies
  • Healthwatch and your local Healthwatch conducts surveys and enables you to have a say on health in your local area
  • Patient Opinion is a website that lets you leave feedback on specific hospitals, clinics and services you have used. The healthcare providers do respond and use feedback, as I’ve used this site myself as a patient.
  • Find your local CCG

Delivering healthcare to other patients

Peer-mentoring is becoming more popular. This is where expert patients or patients who have recovered from their medical condition are working with patients. My local service, Leeds CFS/ME Service, asks patients to give talks at open days. You could try contacting your local service to ask if this is something you could become involved with.

Our individual care

Patient empowerment is about being knowledgeable about our health problems and actively involved in our own healthcare. I’ll be writing about this in more detail in a different blog post, as it’s a big topic. As empowered patients we can make decisions about our own healthcare, such as which treatments we would prefer, with guidance from our health professionals about the pros and cons. This is known as shared decision-making and you can read more in my blog on Making decisions about our health

Patient and public involvement in charities

Charities make it much easier to become involved and also act as the bridge across the gaping chasm between what we get and what we need. The charities aren’t faceless, corporate entities but are patients and families of people with M.E. Action for M.E.’s annual conference in November has Collaborating for change as this year’s theme. Working with Action for M.E. has given me a way of making all the ideas I have for change a reality. My opinions are listened to and valued, and we regularly discuss things that are going on in the M.E. world and beyond.

To me it’s not really important which charity you decide to get involved with; we’re all working towards the same thing. The charities join together for things like the CMRC (see above) and the All Party Parliamentary Group on M.E. . You can find out how to become a volunteer on each of the charities’ websites. Following them on social media, signing up for their e-mail newsletters, and joining as a supporting member to receive their magazines are all ways of finding out how you can become involved, whether it’s participating in surveys or becoming a volunteer.

Getting involved

It’s easy for me to get involved because being a health professional as well as a patient means I know how the health system works and have the confidence to get involved. Through my blog I try to provide information to help patients be more empowered to have our say. You might find the following posts from my blog and resources from health organisations useful:

It would be really useful to know what other sort of practical help, information, or skills would make it easier to join in with these ways of having our say. Check out my new guidelines for comments and leave your comment below. Emily  🙂

Please leave a comment:

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s