On the 10th October 2022, The Royal Society of Medicine held a webinar in association with Fibromyalgia Action UK titled “Fibromyalgia in the 21st century: Redefining care”.
The webinar consisted of patients talking about their lived experience of fibromyalgia (FM) and clinicians who provided updates on scientific knowledge and best clinical guidelines. The webinar was held in two sessions. The ME Association’s Dr Katrina Pears (Research Correspondent) attended the 1st session and Emma Jefferies (Social Media Specialist) attended the 2nd session.
Session 1
Welcome and Introduction
Mr Des Quinn, Chair, Fibromyalgia Action UK
The first session was chaired by Des, who has FM himself, and he briefly described his personal story and the mission of Fibromyalgia Action UK. He explained that the purpose of the webinar was to help spread understanding of the condition, and that the number of people being diagnosed is increasing probably due to wider awareness and recognition.
Climbing the Mountain
Ms Louise Trewern, Vice Chair, Patient Voice Committee, British Pain Society
Louise gave the personal story of her life with FM, starting from when she was a child and always unwell. She described the isolation she felt as you “can’t see the pain that people are in”. She is thankful for her diagnosis as she was worried that “I had MS or cancer, due to how awful I was feeling”.
Before attending a pain clinic, Louise was on a lot of medication to try and manage the pain, including morphine pills. At her first trip to the clinic the nurse told her that the drugs were not working and all the pain she was experiencing was due to side effects, which Louise found very hard to hear.
After experiencing more side effects from the drugs and after having emergency admissions to hospital twice, Louise decided to be voluntarily admitted to hospital to rapidly decrease the dosage she was taking. While in hospital she was told to walk around to manage the withdrawal, this was a turning point which eventually saw her increasing her activity levels.
From being almost completely housebound, Louise found that being outside and walking everyday no matter the weather really helped her condition. She swims in the sea all year round as this provides her with a lot of relief as well as the feeling of weightlessness.
Her advice is to “find things you enjoy doing” to increase your movement and also to embrace good pacing. Louise recommends looking at the LiveWell with pain resource which are useful for patients and clinicians, she particular recommends the “Ten Footsteps” for learning about your pain in order to manage it.
The final comment from her talk was: “we are all different, just because drugs didn’t work for me, doesn’t mean it will be the same for you.”
Improving Outcomes: European Guidelines
Professor Ernest Choy, Head of Rheumatology and Translational Research, Institute of Infection and Immunity and Director, Cardiff Regional Experimental Arthritis Treatment and Evaluation Centre, School of Medicine, Cardiff University
Prof Choy’s talk focused on dismissing the controversies in Fibromyalgia and also his work towards the European Guidelines.
In brief, some of the controversies in FM are due to FM not being a distinct entity as well as turning symptoms into a label (these are known to be cited by George Ehrlich and Norton Hadler).
Prof Choy pointed out that it is hard to study pain as “pain is invisible, we can’t see pain”. He went through numerous studies which prove the pain and existence of FM, such as evidence from:
- Functional MRI (fMRI) scans showing pain processing and that brain activity is the same with and without FM, so pain is not fabricated (Gracely et al., 2002)
- Reduced response to pain in certain brain regions (rostral anterior cingulate cortex) (Jensen et al., 2009)
- Decreased mu-opioid receptor availability – which play a role in pain modulation (Harris et al., 2007)
- Change in the pain modulatory pathway and the reduced receptor occupy in areas in the brain (Tracey et al., 2007)
After presenting a range of published data proving FM, Prof Choy talked about the European guidelines (EULAR) from their development in 2008. In these, a multidisciplinary approach is recommended with the combination of nonpharmacological and pharmacological treatments.
The nonpharmacological recommendations, include aerobic exercise, CBT, patient education, strength training, acupuncture, biofeedback, balneotherapy and hypnotherapy. The pharmacological recommendations, include analgesics, analgesic antiepileptics, antidepressant and weak opioids. EULAR has revised its recommendations in the 2016 guideline, which reviewed all current literature, including almost 300 full papers.
The guidelines acknowledge that prompt diagnosis is required for optimal management. Furthermore, nonpharmacological treatments should be considered first with exercise being the number one recommendation.
He compared the EULAR guidelines to other guidelines around the world. For example, Fibromyalgia doesn’t have its own NICE Guideline in the UK, but it is included in the Guideline ‘Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain’ [NG193] | Published April 2021.
Prof Choy concluded his talk with more published data on FM, which included gender differences and the under diagnosis in males, and the fact that symptoms differ. He stressed the importance of not using tender points for diagnosis as this particularly underdiagnoses males (Cooksey and Choy, 2002).
Prof Choy remarked that Fibromyalgia is “not well understood in primary care”.
Following the presentation, a number of questions were asked, including about the difference between FM and ME/CFS, as well as the different recommendations in exercise and CBT.
Prof Choy explained that fatigue is the major restrictor in ME/CFS, and while there is pain, it is not the restrictor. He also said that Long Covid is more similar to ME/CFS than FM.
Fibromyalgia: Between the Known, Unknown and Controversial
Professor Winfried Häuser, Consultant in Gastroenterology, Hepatology and Pain Medicine, Department of Internal Medicine, Saarbrücken Academic Hospital, Germany
Professor Häuser’s talk focused on his 30 years’ experience working with Fibromyalgia.
The Known:
- FM has a very bad reputation among GPs, but its more than just a pain disorder,
- having just FM on its on is very rare (usually has other diagnoses),
- it is common in 2-4% of the population,
- it’s a long journey to get a diagnosis (average two years),
- it is underdiagnosed in men, it is known as a women’s disease,
- tender points are not accurate for diagnosis,
- there is no cure and full remission is very rare.
- Prognosis is better in children and adolescence,
- normal life expectancy but reduced quality of life,
- some patients can succeed to adapt and obtain life satisfaction.
Professor Häuser also presented studies showing the difference in the brains of FM patients compared to controls (Fitzcharles et al., 2021), stressed that over-medication needs to be avoided and in diagnosis, he would like to “encourage everyone to use a pain diagram”.
The Unknown: He covered two topics: predictors of treatment response/failure and no size fits all. Here psychological therapy was discussed, medications (which should also consider comorbidities e.g., depression) and the fact that patient preferences need to be listened to.
The Controversies: Professor Häuser (see also Prof Choy’s talk above) talked about using Fibromyalgia Syndrome (instead of just FM) to encompass the condition, examined limitations in the various diagnostic criteria, and discussed onset and triggers.
He briefly covered small fiber pathology/neuropathy in FM and the use of medical marijuana. He concluded that he would like to promote exercise and activity in the management of FM and a healthy relationship between patients and clinicians.
Session 2: Chair: Dr Rebecca Berman, Consultant in Pain Medicine, Royal Derby Hospital
Immunity and Fibromyalgia
Dr Andreas Goebbel, Reader and Honorary Consultant in Pain Medicine and Director, Pain Research Institute, University of Liverpool
Dr Goebbel went over a presentation about his work: The passive transfer of fibromyalgia symptoms from patients to mice.
He also mentioned that his team has put in an application to the Medical Research Council for a study about plasma exchange in people with Fibromyalgia.
Fibromyalgia: An integrated approach
Dr Deepak Ravindran, Consultant in Pain Medicine, Royal Berkshire NHS Foundation Trust
A presentation about treating the patient holistically.
Cooking on a high fibre diet: Mr Ian Taverner, Author, Cookfulness
Unable to attend.
Moving
Ms Leila Heelas, Clinical Physiotherapy Lead, Oxford University Hospitals NHS Foundation Trust, Dr Anushka Soni, Clinical Research Fellow, Oxford University
Hospitals NHS Foundation Trust and Dr Sandra Wiltshire, Consultant Clinical Psychologist, Oxford University Hospitals NHS Foundation Trust
A presentation about how the Oxford service use a multidisciplinary team to help support the person with Fibromyalgia.
Panel discussion with all speakers
Chairs: Mr Des Quinn and Dr Rebecca Berman
Questions from the ME Association:
1. Many people with Fibromyalgia also have ME/CFS which may/may not have been diagnosed at the point of delivery. Graded Exercise Therapy is no longer recommended in the NICE Guideline on ME/CFS. Is there a need to look for Post-Exertional Malaise (also seen in Long Covid) before recommending exercise (GET) to people with Fibromyalgia?
Ms Leila Heelas, Clinical Physiotherapy Lead, Oxford University Hospitals NHS Foundation Trust said:
“I guess I better start on that, yes so of course we just as we help people with hypermobility in Fibromyalgia, we also have people with dual diagnosis of chronic fatigue and seeing a lot of people with Long Covid.
“So yes, we are aware of the guidelines and also aware of the impact of Long Covid in terms of Post-Exertional Malaise. We would, I would hope ask people about that assessment and make it part of our evaluation about where we want to go in treatment.
“Our particular service is quite flexible perhaps more so than other services in that we can offer a range of things to people who don't have to just come on a pain management programme we can see people individually, we can see people via video we can put people in certain classes that are particularly adapted for people who may not be very fit, so we can adjust our approach.
“We also are aware that people can always attend now that's whether they've got post exertional malaise or whether they are very depressed or whether they have pain we know that in our particular population people will not always be able to attend regularly so we have extra allowance in all service compared to an outpatient physiotherapy department for instance.
“So, to answer the question, yes I am aware of it, and we are sensitive to it.”
Dr Sandra Wiltshire, Consultant Clinical Psychologist, Oxford University Hospitals NHS Foundation Trust added:
“I was going to say Leila, we do work virtually with people, don’t we? There are virtual groups so people who can't attend can do it all from the comfort of the living room and we very much try and tailor it to work where people are at. We will send people results via email, we always chat, and we spend time individually if we can with people to tailor what we're doing.
“But yes, we definitely put people at the centre of their care, because they are the experts, and they know what works. Because of Covid we have all learnt how to do things online and by phone and we are flexible. We've had lots of people with Fibromyalgia and with other pain conditions say that this more accessible approach has been a real benefit.”
2. With the WHO classification (The International Classification of Diseases (ICD-11) in the category of Chronic widespread pain, and advances in research might we see a NICE Guideline for Fibromyalgia in the near future?
Ms Leila Heelas, Clinical Physiotherapy Lead, Oxford University Hospitals NHS Foundation Trust, said:
“Most of the evidence for the NICE guidelines were four papers about Fibromyalgia, so I would imagine that if you like them or you don't, it would be unlikely that there be new NICE guidelines specifically for Fibromyalgia in the near future at least for now.”
3. It was interesting to hear about the research about autoantibodies in Fibromyalgia, thank you. What are your thoughts on similar studies for people with ME/CFS and Long Covid bearing in mind the overlap of symptoms and also the differences in these conditions (in particular the profound fatigue and Post-Exertional Malaise)?
Dr Andreas Goebbel, Reader and Honorary Consultant in Pain Medicine and Director, Pain Research Institute, University of Liverpool, said:
“Yeah, that would be good. So, we’ve started with Long Covid as well and we found that in highly painful Long Covid that the staining to Dorsal Ganglia looks very similar to Fibromyalgia but that's quite initial results.
“From a pain perspective you would want to do a passive transfer as well, passive transfer experience at least as we would like to do. It's also clear that this morning several people agreed that Long Covid looks to them more like ME/CFS than Fibromyalgia and so then if that's true and I don't have that experience so much and then you know that again goes back to the question of should this be done in ME where fatigue is the predominant issue.
“David Anderson, my collaborator thinks about this a lot. I think it should be done and I don't know whether we can somehow model the fatigue (if not then why not?), we need to do more experiments and it's certainly now on our radar.”
Further information
For further information about the speakers, please visit the FMAUK website that provides their images and bios, which was part of the event promotion prior to the 10th of October.
Fibromyalgia & ME/CFS
Emma Jefferies & Dr Katrina Pears
