Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NICE guideline: stakeholder review

Appendix 1 – Results of the online stakeholder survey about ME/CFS NICE guideline

Introduction

In addition to the interviews and group sessions described in the main report, we also invited people to comment on the NICE guideline and how it might be implemented in Scotland through a short online survey.

Whilst we were able to ensure a representative balance of clinicians, third sector representatives and people with lived experience of ME/CFS in the direct research, this survey was open to anyone – clinicians, people with ME/CFS, third sector organisations – who wanted to contribute. 12 out of the 93 that responded identified themselves as clinicians – the overwhelming majority of responses were from people with lived experience of ME/CFS.

These responses constitute a valuable reflection of lived experience and represent a considerable amount of work on the part of people living with ME/CFS. We appreciate that the energy needed to complete a response is a large investment for anyone living with ME/CFS and the volume of response is testament to how much this community wants to be heard.

Therefore we have presented the results of the survey as a separate piece of work, making clear that it is predominantly the opinions of people living with ME/CFS, or with clinical experience of treating people with ME/CFS.

Responses

What did we ask?

The survey posed three open questions.

1. What should the short term focus and priorities for ME/CFS be in Scotland?

2. What practical tools would be useful in shaping the Scottish guidance for implementation of NICE guidance?

3. What should a specialist service for ME/CFS look like? Who should be on a specialist team, and where should the team be located?

Who took part?

The online survey ran at the same time as the one-to-one interviews with stakeholders and was open for a month. A total of 93 people responded. Most responses were from people living with ME/CFS or caring for someone with ME/CFS.

• 66 people with ME/CFS*
• 13 parents or carers of people with ME/CFS.
• 12 clinicians
• 3 other respondents**

*Two of whom were also clinicians

**One research body, one advocate organisation and one person with Long COVID.

What did people say?

The themes that emerged from the online survey echoed those of the one-to-one interviews explored in the main report. Rather than repeat what would be essentially the same report we have captured the themes that emerged by:

• illustrating each of the key themes that emerged in response to the first question in the words of those with lived experience, using a selection of direct quotes from the survey findings;
• listing all the practical tools and resources people suggested might help the implementation of the NICE guideline; and
• outlining the elements of an ideal specialised service identified by people with lived experience of ME/CFS.

Theme 1: Belief

The basis of all care

Survey respondents noted that belief in ME/CFS needed to be the starting point for any policy or service related to the condition.

• "The trauma of being disbelieved & undermined & ignored by hcp's now means I struggle to communicate with hcp's. I am still ignored. I am still belittled & gas lit. Gas lighting is a huge problem."
• "The FIRST RULE is to believe us when we say that we are ill. BELIEVE us when we say that something will exacerbate our symptoms. BELIEVE us when we say that we are in pain….It is not all in our heads. We are genuinely severely ill and we need help, not hindrance. We should not have to fight for basic care and basic simple consideration."
• "Unfortunately many GPs don't understand ME or how to treat... Indeed need to get doctors generally to accept it as a true condition."
• "[My suggestions] are about helping the person with ME feel supported, understood and believed which has been sadly missing from a lot of medical interaction for many many years. These are the fundamental first steps in correcting the damage that has been done to people with ME over the years and help them build a bit of faith in the medical community."
• "[The priority should be] emphasising once and for all that ME/CFS is a genuine medical condition ie not psychosomatic… along with recognition that many ME patients have in the past been treated with disbelief, rejection and neglect, and that hopefully this will now cease."
• "There is still in quarters a lack of belief that this is a biologically induced medical condition. Many GPs accept this but many don't with a devastating impact on sufferers"
• "My GP 'blanks' me if I mention ME… I feel very offended and unheard that my illness is not understood, let alone recognised in my current GP practice. Nor indeed by staff in local hospitals, in my experience."
• "Training of healthcare professionals is also essential as there is still a belief in some circumstances that it is all in the mind!"

Theme 2: Specialists

Expertise in ME/CFS

Survey respondents stressed the need for specialist services dedicated to ME/CFS, with expert practitioners available to offer diagnosis, after-care and management.

• "To actually provide some specialist care. At present (to the best of my knowledge) there is one specialist nurse in Fife who is entirely inaccessible to the majority of the population of Scotland who have this physical illness."
• "GPs need to be able to support patients to manage their condition by referring to specialists who can treat symptoms. Currently it is extremely difficult, often impossible, to secure a referral which means treatment is largely non-existent and GPs don't know what to do with patients."
• "We do not have ME specialists in Scotland and we need them badly. We also don't have care plans, as there are no specialists to write them. We need actual ME specialists who fully understand the condition, are up to date on the latest research, can support and treat people with ME, can prescribe medication, can provide supporting evidence to the DWP, housing associations, social work, etc."
• "The specialist team should understand and be educated on all facets of ME. Many doctors/specialists still see ME patients as "heart sink patients." If a specialist does not have biomedical training in ME it is pointless being referred to that service. If a specialist is ill informed then they will do more harm than good"
• "Specialist services that we can be referred to for help rather than feeling like we have nowhere to go. We are left to try and manage and figure out such a complex and terribly debilitating illness alone apart from the information we can get online from ME/CFS charities."
• "Partnerships – formal agreements for treatment & support needs to be overseen by a specialist ME practitioner. I mean nearly a decade after being diagnosed with ME, I still have not seen a neurologist."
• "We need to set up specialist teams for people with ME and get many more specialist nurses for regular appointments. I think I read recently that there are 33 specialist nurses for MS (which, don't get me wrong, isn't enough either) but we only have 1."
• "As I've no care plan (who would write one when there are no ME specialists?), if I had to go into hospital suddenly, the hospital would have no way of understanding my needs."
• "I can't access [medication] for ME as there are no ME specialists, and other specialists won't prescribe it as they are not ME specialists."
• "In an ideal world people with ME/CFS would be assigned a support nurse (similar to a breast cancer nurse) to provide emotional and practical support. A named individual that you could call between appointments if you have concerns or queries."

Theme 3: Education

Embedding knowledge in the workforce

Survey respondents outlined the importance of training and education to 'effect a sea-change' in attitude around ME/CFS and increase confidence in diagnosis and management.

• "Inform medical professionals and include information about ME and NICE guideline in medical training. There is nothing in medical curriculum about ME."
• "Roll out an educational programme for ALL health professionals regarding the symptoms of and appropriate support for ME/CFS patients. Include it in the training programmes of new staff but also it needs to be compulsory CPD for existing staff. This is the most important first step. At the moment knowledge is so limited by health professionals (due to lack of training), that they do not understand the challenges we face."
• "Education of healthcare professionals is the most crucial component in creating a shift in culture where people are interested in treating ME."
• "Mandatory education of doctors, nurses and physios on what ME is. We can't hope for proper implementation until the previous misinformation has been dealt with."
• "Training, training and more training, for GPs especially, but also for hospital staff, to increase knowledge, communicate the changes and effect change in both behaviour and beliefs."
• "It would be a bonus if there was education of the general public as there has been so much misinformation up to now. Not to mention education of the DWP who seem to have a very poor understanding of the condition. Hospital wards need to be aware of the extra hazards that having ME pose and stays made as bearable as possible."
• "Education/awareness-raising specifically for health care providers. It needs to be part of every medical courses teaching. This is a massive task but it is vital as there is so much misinformation around ME, such dangerous advice and information being given to sufferers and such a lack of understanding of ME and how it affects people."
• "Wider education for those dealing with people with CFS. My own experience with an insurer and the Ombudsman did not make me feel either organisation had a culture of knowledge or understanding."
• "Education of GP and primary care providers more widely. While the guideline is a landmark moment for people with ME, it will still amount to nothing if clinicians aren't aware of it and gain a basic understanding of ME – which is currently lacking. A programme of mandatory training is needed to bring people up to speed."
• "Educating primary health care providers to speed up timely diagnosis and making sure support services aren't a postcode lottery by ensuring each health board is able to provide adequate, timely and considered care and treatment plans. Perhaps also ensuring the ME is a mandatory part of medical education."
• "I also think anyone in training to become a medical professional, social worker, etc., should be taught properly about ME as part of their education. I know this is a big task, but it's necessary as there has been so much misinformation about ME, and it has been a neglected illness for decades."

Theme 4: Management

Helping people self-manage

Feedback emphasised the importance of early advice to pace, rest and work within an individual energy budget.

• "Make it easy for everyone to understand this condition, what pacing is, what operating within energy envelope means, and why overdoing it, especially in terms of exercise can be harmful. Point out helpful literature that already exists."
• "Advice and support on pacing. No incremental increases. Through understanding of PEM/PESE."
• "Support and correct advice such as convalescing and pacing."
• "As time passes, pacing is vital, not led exercise."
• "Giving people personalised advice about managing their symptoms – this did not happen to me. Also advise them not to use more energy than they perceive they have – they should manage their daily activities and not 'push though' their symptoms."
• "Healthcare professionals need to prescribe rest & understand the meaning of post exertional exhaustion."
• "Issuing clear diagnostic criteria for GPs including information on PEM – this should include example questions for patients or validated scoring systems such as the DePaul Symptom questionnaire to improve diagnosis. Early access to advice: developing patient accessible information on pacing which can be used while awaiting specialist rehab clinics."
• "Patients must be urged to rest and pace themselves, even on good days. This needs to be laid out with examples. Forcing through and plucky spirit only leads to worsening of the illness."
• "Evidence suggests that there is a greater chance of recovery or a reduction in severity of symptoms, if rest & pacing is introduced immediately. Therefore GP knowledge about appropriate patient self help is essential."
• "Define proper "STOP, REST, PACE" protocols and promote support for patients to find their baseline and keep within their energy envelope."

Theme 5: GET and CBT

Changes around GET and CBT

Survey respondents highlighted the recommendations against using GET and how important it now is that this is removed from practice. They welcomed that change in CBT, now positioned as an aid in managing life with a chronic illness, not curative.

• "Stop offering any kind of exercise therapy. Whatever you are calling it, GET or something else, if it involves increasing exercise the evidence says this needs to stop. If it's based on the idea we are deconditioned it is harmful, cruel. It put me in a wheelchair and left me bed bound for a whole year. At which point I was abandoned by the health service as I was now too severe."
• "Abolishing any previous recommendations for GET and CBT and advising a regime of activity management best described as "Pacing"."
• "GET ruined my life (as it does for most ME/CFS patients, something finally acknowledged by the new guidance). This urgently needs to stop being foisted onto unsuspecting patients."
• "It is vital that any member of any specialist service, including Doctors, nurses, therapists etc., have a good understanding of Post Exertional Symptom Exacerbation and understand why GET can cause damage."
• "ME remains taught under Mental Health. If this isn't rectified nothing will change. We will just remain to generate further decades of ill-informed doctors prescribing inappropriate and harmful 'treatments'. The SGPS must be updated to reflect that GET & CBT are not treatments or a cure for ME"
• "There is an urgent need to communicate to all GPs, specialist nurses and any specialist services that still exist in Scotland that the evidence of effectiveness GET and CBT is of "poor" and "very poor" quality and that these interventions should not be promoted to or thrust upon patients."
• "Graded exercise therapy in all its guises should be immediately banned as they are dangerous. Patients should be reminded to keep inside their energy envelope."
• "I cannot tell you how many people's lives I have been able to positively change simply by guiding them to the right resources and by giving them advice on activity management. Please stop harming patients by sending them to services that are only trained in administering GET and CBT."
• "Of particular importance is an understanding of PEM/PESE. The sooner folk are made aware of this along with early diagnosis maybe fewer folk will deteriorate significantly thru ignorance, which happened to me. We need to lose the fear that ME folk have that they will be forced in to GET and CBT."
• "Ensuring GET is not offered to any patient in Scotland and that clinicians are aware that the guideline explicitly states it shouldn't be recommended. While it is still being offered in Scotland, which it currently is, there is huge risk to patients and so this needs to be acted on urgently."
• "Disseminate the revised guidance to ALL clinicians who may have patients with ME: GPs, nurses, hospital doctors, physiotherapists and OTs in hospital and community. Advise Royal Colleges to inform members that GET is now contraindicated and that CBT is only advised for symptom management. This will involve updating training including CPS modules."

Practical tools

Aiding the implementation of NICE in Scotland

Survey respondents suggested a significant number of resources to help shape the implementation of the NICE guideline in Scotland, and, more widely, to use in general education about ME/CFS. These resources can be supplied on request.

Specialist service

A specialist service for ME/CFS

The sections below summarise the feedback from participants of the survey about what a specialised service for ME/CFS could look like, where it should sit, and who should be part of the service.

Ideal ME/CFS Specialist Service

Values

• Committed: based on belief and acceptance of ME/CFS as a complex multi-system condition.
• Accessible: model to include home visits, local appointments, adapted environments and virtual clinics.
• Consistent; offering long-term support – not a 'discharge and abandon' model.
• Co-produced: patient-centred care built around individuals recognising that 'one size does not fit all'.

Services

• Able to confirm diagnosis and perform exclusionary tests for other possible conditions.
• Would offer annual reviews to monitor progress of condition as well as 'drop-ins' responsive to flare-ups and changes in health.
• Hub for information and support on management of ME/CFS, with expert knowledge of energy management and pacing principles.
• Able to signpost to third sector and other key support services.

Location

Local: offered in the community to make the service accessible.

Regional: a fair distribution of clinics across the country, or the option to go to clinics in other health boards (perhaps online).

National: possible central hub (not necessarily a physical hub) of expertise that can be accessed from community provision.

Structure

• Overseen by an ME/CFS consultant / occupational therapist / specialist nurse / GP – the "background is less important that the experience of ME and open-mindedness". If the service was deliverable by a GP / nurse then access to a specialist consultant should be available.
• A linchpin service that can access and navigate to a range of other specialisms to support the multi-system nature of the condition.
• Specialisms mentioned in feedback include: gastroenterology, physiotherapy, cardiology, neurology, dietetics, occupational therapy, orthopaedics, rheumatology, pharmacology, immunology, toxicology, sleep specialists, pain management and endocrinology.

Peer Support

• Partnerships with the third sector to provide peer support and mentoring.
• Services would include emotional support, insight into symptom management and coping strategies for living with a chronic condition.
• Feedback also highlighted the need for support, advice and information for family and carers of people with ME/CFS.

Counselling

• Provision of, or access to, a counselling service or psychological input.
• This support would be to help people live with the secondary impacts of a chronic illness (depression, isolation, relationship breakdown, inability to work), not as a 'curative' approach.

Practical Help

• Inclusion of, or access to, benefit advisors and support staff to help with financial and practical support.
• This could include benefits, home adaptations, access to carers and mobility assistance.
• Advocacy services to act for people living with ME/CFS when dealing with employers, benefits agencies and educational providers.