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NICE (National Institute for Health and Care Excellence) Here is the link to the NICE Guidance for M.E. /Chronic Fatigue Syndrome diagnosis and management published on October 29, 2021 www.nice.org.uk/guidance/ng206 ME exercise therapy guidance scrapped by health watchdog NiceVictory for campaigners as therapy they rated ‘harmful’ is taken off list of recommended treatments Graded exercise therapy has been removed as treatment from the guidance for managing chronic fatigue syndrome. Photograph: Oscar Wong/Getty Images Sarah Marsh@sloumarsh Fri 29 Oct 2021 00.01 BST A disputed therapy that encourages people with ME to gradually increase physical activity will no longer be officially recommended, a health watchdog said, marking a victory for campaigners. The controversial treatment, called graded exercise therapy, has been removed from guidance given by the National Institute for Health and Care Excellence (Nice) for diagnosing and managing myalgic encephalomyelitis, which is also known as chronic fatigue syndrome. The long-awaited landmark guidance had been due in August but was put on hold following concerns from some groups over its contents. It is thought some health professionals had been unhappy with some of the recommendations made by Nice. AdvertisementThe campaign group ME Action UK had urged Nice to publish the guideline – which said graded exercise should not be recommended – without delay, saying evidence demonstrated that graded exercise “harms most people with ME” and that any evidence supporting its use “was deemed to be of low or very low quality by the independent Nice guideline committee”. Charities and patient groups had been fighting for greater recognition of the condition as a medical illness rather than psychological problem. Graded exercise therapy (GET) involves incremental increases in physical activity to gradually build up tolerance. Patient groups have argued that its use suggests those with ME have symptoms due to inactivity. ME is thought to affect about 250,000 people in the UK and has been estimated to cost the economy billions of pounds annually. The condition includes sufferers experiencing mental fogginess, pain and a debilitating loss of energy. It can affect anyone, including children, but is more common in women, and tends to develop when people are in the mid-20s to mid-40s age bracket. Treatments have included, besides graded exercise therapy, medication to control pain, nausea and sleeping problems, as well as cognitive behavioural therapy. Sian Leary, from ME Action UK, said not publishing the guideline in August had been “devastating to thousands of people with ME” whom she said had been “seriously harmed by graded exercise therapy”. Nice held a roundtable meeting in London in October with professional organisations and representatives from interested patient groups to discuss key issues around the guideline. The new guideline says that ME/CFS is a complex condition where there is no “one size fits all” approach to managing symptoms, and adds that any therapy would depend on patient preferences and should not represent a fixed increase in activity. The guideline says people should be given a personalised plan that is reviewed regularly. Nice said this was designed to help people understand their energy limits so they could reduce the risk of over-exertion worsening their symptoms. The guideline also recommends a route to earlier diagnosis for those with ME/CFS, reducing the time-span for persistent symptoms from four months to three before a diagnosis is made. Lady Finlay, consultant in palliative medicine and vice-chair of the guideline committee, said: “ME/CFS is a complex long-term condition that causes disordered energy metabolism and can be profoundly disabling. Those with ME/CFS need to be listened to, understood and supported to adapt their lives. “The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs.” Prof Chris Ponting, at the Institute of Genetics and Molecular Medicine, University of Edinburgh, said: “The new Nice guidelines will improve the lives of people with ME worldwide, well beyond England and Wales. They will improve awareness that graded exercise often makes ME symptoms worse. “Nice took due care and attention developing these guidelines, applying their rigorous methods and listening to highly regarded professionals and lay people. Low and very low-quality scientific evidence was rightly discarded. “Graded exercise therapy and cognitive behavioural therapy cannot now be offered as cures. The new guidelines vindicate the longstanding views of many people with ME, their carers and families.” Prof Peter White, emeritus professor of psychological medicine, at Queen Mary University of London, said: “Having looked after many patients with this illness I worry that this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it. “Nice have banned graded exercise therapy, in spite of it being found to be helpful in a major Cochrane systematic review, while recommending an energy management programme which involves ‘staying within your energy limits’, for which there is little evidence for it helping, and some evidence that it doesn’t.” Global News Health Matters-Covid Long Haul and M.E. June 9, 2021 Here is the interview about ME and covid long haul with Su-Ling Goh on Global News Edmonton tonight. Thank you to Anastasia and Dr. Amir Landi for this excellent interview. https://globalnews.ca/video/rd/1e8b8e74-c988-11eb-8ff6-0242ac110007/?jwsource=fb&fbclid=IwAR3xxIC0P9IGX7QoxTwARhsQd2Im3qgVUsaYdFJXD1d473AWlaQ34NT-W3A Health Matters: The similarities between long COVID and chronic fatigue syndrome | Watch News Videos Online Watch Health Matters: The similarities between long COVID and chronic fatigue syndrome Video Online, on GlobalNews.ca globalnews.ca Open Medicine Community News July 25, 2020 Riding to Raise Awareness: A Sister's Fight to End ME/CFS Biking from coast to coast of any country is a significant journey. Although the stunning backdrop of Sweden's coastline may be enough to inspire the ride, the motive for Swedish OMF supporter Olivia goes much deeper; Olivia's sister Clara has ME/CFS, and has been bedridden for the majority of the past year and a half. Through the family's grief, Olivia decided to take action to fight for her sister and the millions of others who suffer from ME/CFS around the globe. This past June, Olivia launched “Bike for ME/CFS,” an ambitious campaign in honor of Clara. “Clara recently sold her bike to me since she can no longer use it," Olivia explains. “I’m now riding it from the east coast of Sweden where she lives back to the west coast where I live. Along my journey, I try to raise awareness of ME/CFS and collect money for OMF funded research. To help people understand, I present facts about ME and share personal experiences of my sister and others suffering from the disease.” Olivia has so far ridden for nearly 250 miles, capturing the hearts of many along the way. Bike for ME/CFS has been featured in local papers and radio shows, giving people with ME/CFS in Sweden and beyond visibility, inspiring further funding into research of the disease. Thanks to her hard work and dedication to the cause, Olivia has already raised more than $1,800 in support of OMF funded research! But she’s not stopping there. "I'm planning on doing more trips in the future," she says. We’d like to thank Olivia for riding to raise awareness and sharing her touching story of sibling love with the world. With allies like Olivia on our team, we can further our mission to end ME/CFS — so that one day people like Clara can bike with her sister again. You can virtually join Olivia on her journey by following Bike for ME/CFS on Facebook or Instagram. _______________________________________________________________________________________________________________ "Team Walk with ME" Completes 24-Hour Hike Raises Funds and Awareness for ME/CFS This past June, the Swedish ME/CFS advocacy team known as, "Walk with ME - ett Fotrallylag," completed a successful 24-hour hike to raise awareness of ME/CFS and funds for OMF-supported research. Thanks to their advocacy and hard work, they've raised over $3,300! Team Walk with ME's founder Magnus Svensson said of the emotional journey: "24 hours and just over 114 km. New acquaintances have been made. Friendships have been strengthened. Tears of joy and pain have fallen and dried." Magnus is passionate about raising money for research in honor of his wife, who suffers from ME/CFS. He says the idea behind a 24-hour walkathon is “not to equate the pain and exhaustion of a ‘long walk’ with that of ME/CFS. You can’t. I can always choose not to go for a long walk-then I wouldn’t have to be exhausted or in severe pain. "With ME/CFS, you can’t choose. The patients live with pain and exhaustion around the clock. I want to inform others about ME/CFS and raise money for OMF's biomedical research.” The tireless dedication of Team Walk With ME captures the true strength and spirit of family members, caregivers, and allies of people with ME/CFS. Their commitment to the cause helps inspire change and raise awareness for people with ME/CFS and related chronic and complex diseases. Thank you to the team – we couldn’t do this work without you! You can stay connected with Team Walk with ME by following them on Instagram, Facebook, or visiting Magnus's website: https://mylongwalkforme.se/ ________________________________________________________________________________________________________________ OMF Ambassador Jacqueline Ko Celebrates her Birthday with a Fundraiser In honor of OMF Celebrity Ambassador Jacqueline Ko’s recent birthday, we’d like to spotlight the advocacy work of Opera Mariposa, a Canadian organization co-founded by Jacqueline with an extraordinary mission in mind. Opera Mariposa was founded in 2012 by Jacqueline Ko and childhood best friend Robin Hahn. The Vancouver-based company provides a unique platform that showcases and nurtures the emerging talent of local and international artists. Not only is Opera Mariposa committed to supporting the arts, it is also Canada’s only entirely disability-led and disability-run opera company. The team at Opera Mariposa says, “We’re particularly dedicated to increasing visibility and representation for artists with disabilities, and our work was featured in the book ‘Lighting Up a Hidden World: CFS and ME’ by Valerie Free." Scene from Opera Mariposa's production of Gianni Schicchi, 2019. Diamond's Edge Photography. (Left to right: Kimani Troy Iba, Barry Honda, Libby Donald, Lauren Solomon, Cameron Killick, Jacqueline Ko, Jonathan Gagné, Zainen Suzuki) For Jacqueline, the fight to raise awareness of ME/CFS and funds for research is personal: Both she and her sister, Stephanie, suffer from ME/CFS. Bed-bound from the disease for a large portion of her childhood, Jacqueline has become determined to merge her love of music with advocacy. At age 17, Jacqueline presented her first Benefit + Awareness concert for ME/CFS. A decade later, Opera Mariposa’s annual Benefit + Awareness events have raised over $90,000 for ME/CFS treatment, research, education, and patient support. For her birthday this year, Jacqueline has generously kicked off a Facebook fundraiser for OMF Canada. She explains that it’s especially critical to fund research of ME/CFS during the COVID-19 pandemic: "ME/CFS affects over 20 million people worldwide, including me and my sister Stephanie. It is a critical health concern worldwide right now, since it's known to be triggered by viruses. Cases of ME/CFS have followed coronaviruses like SARS and MERS, and researchers estimate that as many as 10 percent of people with COVID-19 may go on to develop ME/CFS, as well." Today we had the exciting opportunity to ask Jacqueline and her sister Stephanie a few questions about their lives, advocacy work, and hopes for the future. Both of you have ME/CFS. How has this impacted your relationship as sisters? "It’s probably made our relationship more balanced, actually – less of an older sister/younger sister dynamic, and more of a collaboration. We tend to pool our energy resources when we work on projects; we have different but complementary aptitudes and limitations because of our health, but also just as individuals, so it makes sense to undertake things as a joint effort." What has Jacqueline been up to recently? "We've just finished work on Opera Mariposa's eighth annual Benefit + Awareness event for ME/CFS and related illnesses, which due to COVID-19 was our first all-digital charity campaign. We're happy to say that we raised nearly $10,000 for at-risk patients and families in our local community, which brings Mariposa's charity fundraising total to over $90,000 to date. Now, Jacqui's mostly resting and recovering, as well as doing a bit of planning for future projects. She's also been checking out some new opera and theatre productions online, including holding a couple of virtual opera-watching parties with friends." What gives you the most hope for the future? "One of the most hopeful things for both of us right now is seeing the growing awareness of ME/CFS and other complex chronic diseases, and the way that's translating into action – such as through the vital work that OMF undertakes!" OMF extends our sincere gratitude to Jacqueline and the entire team at Opera Mariposa. We are proud to have OMF Celebrity Ambassadors like Jacqueline who use their talents to raise the voices of all who suffer from ME/CFS and related chronic and complex diseases. We ask our Canadian friends to consider giving the gift of hope by supporting Jacqueline’s fundraiser today. You can also follow Opera Mariposa on Instagram, Facebook, Twitter, and YouTube, as well as via their newsletter to show support of their mission and to get the latest updates on their events and advocacy work. ______________________________________________________________________________________________________________ ______________________________________________________________________________________________________________ Sleep deprivation can mimic chronic fatigue Initiating Care Of A Patient With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Chronic fatigue syndrome – A comic by Rosa Devine Unprecedented continuing medical education on ME/CFS brings relief to doctors and patients alike. Great news! Su-Ling Goh of the Health Beat of Global News Edmonton interviewed our own Judy-Anne Wilson and Tanya, Manager of Clinical Operations of Primary Care Network Oliver, here in Edmonton regarding our first presentation of the Primary Care Staff ME Information Session. The session took place at the same time as the kick-off of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network at 12 noon MST, October 28, 2019 in Edmonton, AB. They also interviewed Dr. Amir Landi and some of the other researchers at the U of A for the story as well. We are hoping to raise awareness and let people know how important this research is, and about contributing to endowment funds at the U of A for ME Research. |
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Identification and symptom management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)
New Clinical Practice Guidelines for ME/CFS
TOP’s new Clinical Practice Guideline (CPG) responds to the need for greater awareness that Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic, debilitating physical condition that can be identified and successfully managed in the primary care setting.
The CPG aims to equip clinicians with the necessary knowledge and tools to identify and provide symptom management while empowering the patient by acknowledging the legitimacy of the condition and respecting the patient’s lived experience.
Toward Optimized Practice (TOP) is one of several key programs within the Alberta Medical Association supporting Alberta physicians. TOP works with Alberta physicians and the teams implement evidence-based practices to enhance the care of their patients http://www.topalbertadoctors.org/home/
To view both the CPG and summary document click here.
To view all TOP CPGs and/or subscribe for updates click here.
Clinical Practice Guidelines (CPG) are documents which take into account all of the published, peer reviewed medical literature and make recommendations based on that evidence.
Evidence based guidelines exist in fields like treatment of heart disease where multiple large studies of the same treatment can be compared statistically. In cases where the evidence isn’t conclusive many guidelines end up recommending nothing. While statistically accurate, this approach is unhelpful for clinicians who desperately need guidance while waiting for stronger evidence to accumulate.
An evidence informed guideline fills this gap by including expert opinion/consensus where needed. As long as this process is transparent (doesn’t imply things are “proven” when they are not) evidence informed guidelines provide a valuable source of information to clinicians. This new guideline is evidence informed combining a thorough review of the literature with expert opinion derived in large part from the IACFS/ME 2014 Primer for Clinicians http://iacfsme.org/ME-CFS-Primer-Education/News/News-Related-Docs/2014/ME-CFS-Primer-for-Clinical-Practitioners-%282014-rev.aspx
The Guidelines use the Canadian Consensus diagnostic criteria developed in 2003 http://mefmaction.com/index.php?option=com_content&view=article&id=215&Itemid=262
This CPG was drafted by an expert committee of Towards Optimal Practice (TOP). I served as the content expert on the committee. We also had one scientist/researcher, one patient advocate, one psychologist and 3 family physicians on the committee. All the committee members have considerable knowledge of and experience with individuals with ME/CFS. We had access to a professional librarian to access all of the literature needed and a professional guidelines facilitator to draft the guidelines. It was a positive experience with everyone agreeing on the importance of the task and having an understanding of the unmet needs of individuals with ME/CFS. I am very proud of the guidelines.
My hope is that these guidelines will be promoted and used across jurisdictions in Canada and abroad. All family physicians and relevant specialists in Alberta were sent an email about these guidelines. Please read these guidelines and consider lobbying for adoption in your area. If you are a patient please discuss these guidelines with your doctor. Maybe they can help him/her help you.
For more information please contact me.
Ellie Stein MD FRCP(C)
4523 – 16 A Street SW
Calgary, Alberta T2T 4L8
Phone: 403 287-9941 Fax: 403 287-9958 E-mail: [email protected]
web: www.eleanorsteinmd.ca
New Clinical Practice Guidelines for ME/CFS
TOP’s new Clinical Practice Guideline (CPG) responds to the need for greater awareness that Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic, debilitating physical condition that can be identified and successfully managed in the primary care setting.
The CPG aims to equip clinicians with the necessary knowledge and tools to identify and provide symptom management while empowering the patient by acknowledging the legitimacy of the condition and respecting the patient’s lived experience.
Toward Optimized Practice (TOP) is one of several key programs within the Alberta Medical Association supporting Alberta physicians. TOP works with Alberta physicians and the teams implement evidence-based practices to enhance the care of their patients http://www.topalbertadoctors.org/home/
To view both the CPG and summary document click here.
To view all TOP CPGs and/or subscribe for updates click here.
Clinical Practice Guidelines (CPG) are documents which take into account all of the published, peer reviewed medical literature and make recommendations based on that evidence.
Evidence based guidelines exist in fields like treatment of heart disease where multiple large studies of the same treatment can be compared statistically. In cases where the evidence isn’t conclusive many guidelines end up recommending nothing. While statistically accurate, this approach is unhelpful for clinicians who desperately need guidance while waiting for stronger evidence to accumulate.
An evidence informed guideline fills this gap by including expert opinion/consensus where needed. As long as this process is transparent (doesn’t imply things are “proven” when they are not) evidence informed guidelines provide a valuable source of information to clinicians. This new guideline is evidence informed combining a thorough review of the literature with expert opinion derived in large part from the IACFS/ME 2014 Primer for Clinicians http://iacfsme.org/ME-CFS-Primer-Education/News/News-Related-Docs/2014/ME-CFS-Primer-for-Clinical-Practitioners-%282014-rev.aspx
The Guidelines use the Canadian Consensus diagnostic criteria developed in 2003 http://mefmaction.com/index.php?option=com_content&view=article&id=215&Itemid=262
This CPG was drafted by an expert committee of Towards Optimal Practice (TOP). I served as the content expert on the committee. We also had one scientist/researcher, one patient advocate, one psychologist and 3 family physicians on the committee. All the committee members have considerable knowledge of and experience with individuals with ME/CFS. We had access to a professional librarian to access all of the literature needed and a professional guidelines facilitator to draft the guidelines. It was a positive experience with everyone agreeing on the importance of the task and having an understanding of the unmet needs of individuals with ME/CFS. I am very proud of the guidelines.
My hope is that these guidelines will be promoted and used across jurisdictions in Canada and abroad. All family physicians and relevant specialists in Alberta were sent an email about these guidelines. Please read these guidelines and consider lobbying for adoption in your area. If you are a patient please discuss these guidelines with your doctor. Maybe they can help him/her help you.
For more information please contact me.
Ellie Stein MD FRCP(C)
4523 – 16 A Street SW
Calgary, Alberta T2T 4L8
Phone: 403 287-9941 Fax: 403 287-9958 E-mail: [email protected]
web: www.eleanorsteinmd.ca
Defining Moments – Dr. Leonard Jason on the House of Cards in
Chronic Fatigue Syndrome
By Cort Johnson
A talk on definitions might not seem to be the occasion for one of the more passionate and exciting presentations of the conference, but it was. Lenny Jason is convinced that getting the definition right is absolutely critical for the future of Chronic Fatigue Syndrome, and he’s passionate about it. By the time he was done I was convinced, and I imagine everyone else in the room was as well. It may have been the best presentation of the conference.
How bad is the situation right now? Jason started off by showing a house of cards on which everything — the research, the search for biomarkers, treatments — is endangered by a vague understanding of ME/CFS.
Building the right definition is just one part of the process. Rigorously characterizing every important aspect of this illness so that everybody is on the same page is another. It’s about making ME/CFS understandable and above all ‘studyable’. There’s no mystery how to go about this. It’s been done in other fields — it just takes work.
Standardized Questionnaires
Chronic Fatigue Syndrome, he noted, is decades behind other illnesses in the hard work of standardizing its core aspects. ME/CFS is where psychology was in the 1950s when diagnoses were made without using standardized criteria. That meant a person could go to one doctor and get one diagnosis and walk across the hall to another doctor and get another one. Doctors each had their own way of determining if someone was depressed.
In 1972 a St. Louis group devised ‘operationally explicit criteria’ — standardized questionnaires — that all doctors would follow henceforth. That ‘simple’ practice led to an immediate and dramatic improvement in physician-to-physician consistency.
A standardized interview process was the key.
Operationalizing Core Aspects of Chronic Fatigue Syndrome
We hardly have the ‘easy stuff’ done at this point.
Life-Long Fatigue – Take the seemingly simple issue of determining whether someone has had life-long fatigue. That’s an important issue because people with ME/CFS are considered to have a fatigue onset at some point but not ‘life-long’ fatigue. That means you probably want to weed the people with life-long fatigue out of research studies. But it turns out that, if you simply ask someone if they’ve had life-long fatigue, a significant number of people are going to answer incorrectly.
Jason stated that, when asked, 20 of 217 people with Chronic Fatigue Syndrome (Fukuda) said they had life-long fatigue. Asking them two more questions indicated, however, that nine did not. Asking another question knocked almost 50% of them out. Operationalizing the life-long fatigue question (it took four questions) put 60% of the people who initially thought they had life-long fatigue (or about 5% of the ME/CFS population) back into a potential ME/CFS study.
Fatigue — a core characteristic of ME/CFS — is another difficult issue. About 10% of severely impaired individuals with ME/CFS do not experience much fatigue, apparently, because they’re rigorously staying within their energy envelope. Unless that’s made clear, those individuals could fall out of a research study.
And then there’s onset. There’s gradual onset, gradual onset punctuated by infectious episodes, sudden onset that comes completely out of the blue, and sudden onset preceded by a series of infectious episodes. There are infectious events, psychological stressors of various sorts (work, personal), activity levels, and injuries to account for. There’s defining the difference between gradual and sudden.
My own ME/CFS, for instance, came on over about a month. Is that gradual or is that more sudden or is it in between? Then I got better for about three months, and then I gradually got worse and it stuck. I had punctuated episodes of gradual onset not associated with infection or trauma or severe stress. That’s a pretty complicated scenario, which makes the fact that one of Jason’s students is doing her doctoral dissertation on onset no surprise. If you can’t get a life-long stress question answered correctly, how are you going to get onset right? Should that be “fatigue” instead of “stress”?
After listening to Jason it became clear that you can probably throw just about every existing onset study out the window. Jason asserted that this sloppy approach to ME/CFS is a dead weight on the ME/CFS field that simply has to be removed.
Comparing and Contrasting the Definitions
Studies comparing and contrasting the different definitions provide something of a wakeup call. They’re critical to determining which definition is best, but the high variance in study results – with one study finding that 50% of Fukuda patients meet the Canadian Criteria while another finds 90% – indicates something is awry here as well.
DePaul Symptom Questionnaire Provides Help
Jason’s DePaul Symptom Questionnaire, which includes both symptom severity and frequency (i.e., is your headache severe and infrequent, severe and frequent, moderate and occurs often, etc.), is a significant step forward. Earlier studies by the Jason team found that simply asking if the symptoms in the Fukuda definition were present resulted having some people with major depression being diagnosed with ME/CFS. The symptoms in Fukuda were simply too similar to those found in depression for that not to happen. Before the DePaul Symptom Questionnaire people simply had to have a symptom, now they have to meet criteria for severity and frequency.
However, if those same symptoms were assessed according to severity, it was pretty easy to differentiate the two. People with ME/CFS had much more post-exertional malaise, cognitive problems, and unrefreshing sleep than people with major depression. Adding a couple of more symptoms such as shortness of breath, self-reproach (low in ME/CFS/high in depression), and others to the questionnaire made the diagnosis bulletproof: nobody with major depression was diagnosed with ME/CFS and vice versa.
A large 2014 Jason study found that a third of the healthy controls meet the criteria for Chronic Fatigue Syndrome when they were simply required to have a symptom; i.e., they experience ‘fatigue’. Only 5% met the criteria and 95% of people were identified correctly when people with ME/CFS were required to have a higher frequency and severity of symptoms.
The DePaul Symptom Questionnaire also has algorithms built into it that can tell whether a patients meets the Fukuda, Canadian, ICC or London criteria. With this one advance any researcher who used this questionnaire could be able to tell how different types of patients fared on his study. The questionnaire is now being used in Canada, Mexico, England, and Norway as well as by the CFIDS Association Biobank and the CDC in the USA.
The Next Research Definition
Consensus definitions have played a very important role (for good or bad) in ME/CFS and they still will in the doctor’s office, but in the research field their time has clearly come and gone. Factor analyses and data mining can now determine the symptoms that best discriminate between people with ME/CFS and those without. A machine learning program indicated that most discriminative symptoms for ME/CFS were in order of importance: (central?) fatigue, neurocognitive problems, post-exertional malaise, unrefreshing sleep, and joint pain. Properly defining ME/CFS will likely require only three symptoms. More symptoms will be used to subtype the disorder
Lenny chastised the ME/CFS community a bit for not learning from the past and producing definitions (CCC, ICC) that have too many symptoms to work as a research definition. The eight symptoms in the first definition for CFS — the Holmes definition — ended up capturing people with high percentages of psychiatric illnesses. The Fukuda definition with its reduced symptom requirements was produced to fix that problem, but then the CCC and ICC with their long symptom lists bumped into the Holmes problem.
Jason asserted that just three core symptom domains — post-exertional malaise, sleep and cognitive functioning — were all that was necessary to discriminate between ME/CFS and other disorders, and avoid the problem of oversampling people with psychiatric illnesses. One Jason study found that simply asking people if they experienced ‘extreme tiredness’, had trouble focusing on one thing at a time, and if they had a dead feeling after exercise was sufficient to accurately classify people with ME/CFS.
His analyses show that adding more symptoms to the definition doesn’t improve the accuracy or specificity of the definition. He proposed using symptoms such as pain, autonomic nervous system functioning, neuroendocrinology, etc., to subtype patients — but only the three core symptoms would be used to define ME/CFS.
Oxford Definition
Jason was asked in the question period about the Oxford definition which simply requires long-lasting fatigue to meet the criterion for Chronic Fatigue Syndrome.
The Oxford definition is to the UK what the Empirical Definition is to the CDC; the UK and some European researchers are the only ones that use it. Nobody outside that small clique has ever used it. I can’t imagine it’s ever once been used in the U.S., yet there it is. One has to ask why UK behavioral researchers, in particular, have so stubbornly stuck to it.
Jason said the Oxford definition probably applies to about five percent of the population and probably includes people who are simply overworked, have substance abuse, or are depressed. My guess is that each of these problems is probably more amenable to CBT and GET than ME/CFS and UK behaviorists would lose a good chunk of their funding if their definition was more tightly constructed.
The 'Virgin’ ME/CFS Subset
Jason believes that studying young people is critically important because they don’t have the all the medications, the medical history, and the trauma that make this disease more difficult to study as patients get older. If you can catch them early before the misdiagnoses, the drug regimens that don’t work, and the depression that often sets in, you have a cleaner shot at this illness.
Conclusion
The Foundations are slowly being laid for more rigorous and effective ME/CFS research efforts The good news is that the Jason team is building structured interviews specifically for ME/CFS, the DePaul Symptom Questionnaire with its symptom and severity fields is light years beyond the Fukuda definition in being able meaningfully characterizing the symptoms found in ME/CFS, and perhaps most importantly, Jason’s ability to statistically characterize the symptoms found in ME/CFS means he’s provided the groundwork for a research definition that works.
The foundations being laid by Dr. Jason and others will support more rigorous and effective research efforts that feature people with ME/CFS and only people with ME/CFS.
Dr. Jason will be speaking on Diagnostic and Criterion Issues in ME/CFS at the IOM meeting on May 5th.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.
Chronic Fatigue Syndrome
By Cort Johnson
A talk on definitions might not seem to be the occasion for one of the more passionate and exciting presentations of the conference, but it was. Lenny Jason is convinced that getting the definition right is absolutely critical for the future of Chronic Fatigue Syndrome, and he’s passionate about it. By the time he was done I was convinced, and I imagine everyone else in the room was as well. It may have been the best presentation of the conference.
How bad is the situation right now? Jason started off by showing a house of cards on which everything — the research, the search for biomarkers, treatments — is endangered by a vague understanding of ME/CFS.
Building the right definition is just one part of the process. Rigorously characterizing every important aspect of this illness so that everybody is on the same page is another. It’s about making ME/CFS understandable and above all ‘studyable’. There’s no mystery how to go about this. It’s been done in other fields — it just takes work.
Standardized Questionnaires
Chronic Fatigue Syndrome, he noted, is decades behind other illnesses in the hard work of standardizing its core aspects. ME/CFS is where psychology was in the 1950s when diagnoses were made without using standardized criteria. That meant a person could go to one doctor and get one diagnosis and walk across the hall to another doctor and get another one. Doctors each had their own way of determining if someone was depressed.
In 1972 a St. Louis group devised ‘operationally explicit criteria’ — standardized questionnaires — that all doctors would follow henceforth. That ‘simple’ practice led to an immediate and dramatic improvement in physician-to-physician consistency.
A standardized interview process was the key.
Operationalizing Core Aspects of Chronic Fatigue Syndrome
We hardly have the ‘easy stuff’ done at this point.
Life-Long Fatigue – Take the seemingly simple issue of determining whether someone has had life-long fatigue. That’s an important issue because people with ME/CFS are considered to have a fatigue onset at some point but not ‘life-long’ fatigue. That means you probably want to weed the people with life-long fatigue out of research studies. But it turns out that, if you simply ask someone if they’ve had life-long fatigue, a significant number of people are going to answer incorrectly.
Jason stated that, when asked, 20 of 217 people with Chronic Fatigue Syndrome (Fukuda) said they had life-long fatigue. Asking them two more questions indicated, however, that nine did not. Asking another question knocked almost 50% of them out. Operationalizing the life-long fatigue question (it took four questions) put 60% of the people who initially thought they had life-long fatigue (or about 5% of the ME/CFS population) back into a potential ME/CFS study.
Fatigue — a core characteristic of ME/CFS — is another difficult issue. About 10% of severely impaired individuals with ME/CFS do not experience much fatigue, apparently, because they’re rigorously staying within their energy envelope. Unless that’s made clear, those individuals could fall out of a research study.
And then there’s onset. There’s gradual onset, gradual onset punctuated by infectious episodes, sudden onset that comes completely out of the blue, and sudden onset preceded by a series of infectious episodes. There are infectious events, psychological stressors of various sorts (work, personal), activity levels, and injuries to account for. There’s defining the difference between gradual and sudden.
My own ME/CFS, for instance, came on over about a month. Is that gradual or is that more sudden or is it in between? Then I got better for about three months, and then I gradually got worse and it stuck. I had punctuated episodes of gradual onset not associated with infection or trauma or severe stress. That’s a pretty complicated scenario, which makes the fact that one of Jason’s students is doing her doctoral dissertation on onset no surprise. If you can’t get a life-long stress question answered correctly, how are you going to get onset right? Should that be “fatigue” instead of “stress”?
After listening to Jason it became clear that you can probably throw just about every existing onset study out the window. Jason asserted that this sloppy approach to ME/CFS is a dead weight on the ME/CFS field that simply has to be removed.
Comparing and Contrasting the Definitions
Studies comparing and contrasting the different definitions provide something of a wakeup call. They’re critical to determining which definition is best, but the high variance in study results – with one study finding that 50% of Fukuda patients meet the Canadian Criteria while another finds 90% – indicates something is awry here as well.
DePaul Symptom Questionnaire Provides Help
Jason’s DePaul Symptom Questionnaire, which includes both symptom severity and frequency (i.e., is your headache severe and infrequent, severe and frequent, moderate and occurs often, etc.), is a significant step forward. Earlier studies by the Jason team found that simply asking if the symptoms in the Fukuda definition were present resulted having some people with major depression being diagnosed with ME/CFS. The symptoms in Fukuda were simply too similar to those found in depression for that not to happen. Before the DePaul Symptom Questionnaire people simply had to have a symptom, now they have to meet criteria for severity and frequency.
However, if those same symptoms were assessed according to severity, it was pretty easy to differentiate the two. People with ME/CFS had much more post-exertional malaise, cognitive problems, and unrefreshing sleep than people with major depression. Adding a couple of more symptoms such as shortness of breath, self-reproach (low in ME/CFS/high in depression), and others to the questionnaire made the diagnosis bulletproof: nobody with major depression was diagnosed with ME/CFS and vice versa.
A large 2014 Jason study found that a third of the healthy controls meet the criteria for Chronic Fatigue Syndrome when they were simply required to have a symptom; i.e., they experience ‘fatigue’. Only 5% met the criteria and 95% of people were identified correctly when people with ME/CFS were required to have a higher frequency and severity of symptoms.
The DePaul Symptom Questionnaire also has algorithms built into it that can tell whether a patients meets the Fukuda, Canadian, ICC or London criteria. With this one advance any researcher who used this questionnaire could be able to tell how different types of patients fared on his study. The questionnaire is now being used in Canada, Mexico, England, and Norway as well as by the CFIDS Association Biobank and the CDC in the USA.
The Next Research Definition
Consensus definitions have played a very important role (for good or bad) in ME/CFS and they still will in the doctor’s office, but in the research field their time has clearly come and gone. Factor analyses and data mining can now determine the symptoms that best discriminate between people with ME/CFS and those without. A machine learning program indicated that most discriminative symptoms for ME/CFS were in order of importance: (central?) fatigue, neurocognitive problems, post-exertional malaise, unrefreshing sleep, and joint pain. Properly defining ME/CFS will likely require only three symptoms. More symptoms will be used to subtype the disorder
Lenny chastised the ME/CFS community a bit for not learning from the past and producing definitions (CCC, ICC) that have too many symptoms to work as a research definition. The eight symptoms in the first definition for CFS — the Holmes definition — ended up capturing people with high percentages of psychiatric illnesses. The Fukuda definition with its reduced symptom requirements was produced to fix that problem, but then the CCC and ICC with their long symptom lists bumped into the Holmes problem.
Jason asserted that just three core symptom domains — post-exertional malaise, sleep and cognitive functioning — were all that was necessary to discriminate between ME/CFS and other disorders, and avoid the problem of oversampling people with psychiatric illnesses. One Jason study found that simply asking people if they experienced ‘extreme tiredness’, had trouble focusing on one thing at a time, and if they had a dead feeling after exercise was sufficient to accurately classify people with ME/CFS.
His analyses show that adding more symptoms to the definition doesn’t improve the accuracy or specificity of the definition. He proposed using symptoms such as pain, autonomic nervous system functioning, neuroendocrinology, etc., to subtype patients — but only the three core symptoms would be used to define ME/CFS.
Oxford Definition
Jason was asked in the question period about the Oxford definition which simply requires long-lasting fatigue to meet the criterion for Chronic Fatigue Syndrome.
The Oxford definition is to the UK what the Empirical Definition is to the CDC; the UK and some European researchers are the only ones that use it. Nobody outside that small clique has ever used it. I can’t imagine it’s ever once been used in the U.S., yet there it is. One has to ask why UK behavioral researchers, in particular, have so stubbornly stuck to it.
Jason said the Oxford definition probably applies to about five percent of the population and probably includes people who are simply overworked, have substance abuse, or are depressed. My guess is that each of these problems is probably more amenable to CBT and GET than ME/CFS and UK behaviorists would lose a good chunk of their funding if their definition was more tightly constructed.
The 'Virgin’ ME/CFS Subset
Jason believes that studying young people is critically important because they don’t have the all the medications, the medical history, and the trauma that make this disease more difficult to study as patients get older. If you can catch them early before the misdiagnoses, the drug regimens that don’t work, and the depression that often sets in, you have a cleaner shot at this illness.
Conclusion
The Foundations are slowly being laid for more rigorous and effective ME/CFS research efforts The good news is that the Jason team is building structured interviews specifically for ME/CFS, the DePaul Symptom Questionnaire with its symptom and severity fields is light years beyond the Fukuda definition in being able meaningfully characterizing the symptoms found in ME/CFS, and perhaps most importantly, Jason’s ability to statistically characterize the symptoms found in ME/CFS means he’s provided the groundwork for a research definition that works.
The foundations being laid by Dr. Jason and others will support more rigorous and effective research efforts that feature people with ME/CFS and only people with ME/CFS.
Dr. Jason will be speaking on Diagnostic and Criterion Issues in ME/CFS at the IOM meeting on May 5th.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.
