The end of September was a whirlwind! Between the CDC’s website work, the CDC’s awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn’t much time to devote to breaking down the science. If you’d like to see a quick run-down of what’s been going on lately in our alphabet agencies, check out the article here.
Don’t worry, we didn’t omit September. Instead, we created a giant roundup for September and October! Shout-out to my assistant, Julia, without whose help this behemoth would not exist. Because this is going to be a pretty enormous chunk, here are some links to help you jump from section to section:
Research
Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A 2-day cardiopulmonary exercise test (2-day CPET) has previously been suggested by the Institute of Medicine as a reliable methodology for assessing the severity of post-exertional malaise (PEM) or diagnosing ME/CFS. Stevens et. al have produced a clear, reliable, and reproducible method for researchers or clinicians to perform a CPET on people with ME.
A 2-day CPET assesses an individual’s level of physical impairment by measuring a patient’s maximum ability to do an activity (VO2 peak) and subsequently assessing metabolic abnormalities. Stevens et. al have outlined and discussed both the limitations and importance of the 2-day CPET as it relates to ME.
Immunosignature Analysis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Fluge and Mella‘s group investigated a strategy for diagnosing ME/CFS based on irregular levels of antibodies in people with the disease. This study proposes that those with ME generally experience immune dysfunction, and therefore will show altered antibody profiles. This immunosignature will allow for a delineation between the antibodies in those with ME when compared to healthy controls.
256 different peptides were examined in 25 Canadian Consensus Criteria-identified people with ME/CFS and 25 healthy controls. The study will need to be repeated in a larger sample in order to be verified.
CD24 Expression and B Cell Maturation Shows a Novel Link With Energy Metabolism: Potential Implications for Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome This paper from Faye Mensah, Chris Armstrong, Reddy, Bansal, Berkovitz, Leandro, and Cambridge examined the marker CD24 on the surface of B cells in people with ME. CD24 is of especial interest because it is said to affect B cell metabolism. Mensah and colleagues found that CD24 expression on B cells in people with ME was higher than that in the cells of healthy controls. There was a corresponding correlation between CD24 expression on B cells and the usage of glucose and secretion of lactate when those same cells were cultured. If you have followed Armstrong’s other work, you know what to expect: lactate was up and glucose was down in the B cells of people with ME. A paper worth delving into; you can also find out more by reading Jo Cambridge’s blog post on this project.
Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function: The gut and oral microbiome are often indicators of health status and can be used to target a treatment plan. Wang and colleagues were able to find a significant difference between the oral microbiome of Fukuda CFS patients and healthy controls (p < 0.01). CFS patients had a higher relative abundance of Fusobacteria, and the genera Leptotrichia, Prevotella, and Fusobacterium were also higher. Haemophilus, Veillonella, and Porphyromonas were lower. Altered oral microbiomes can be indicative of altered metabolic functioning, as microbes often contribute to energy metabolism and release biologically active metabolites. Researchers believe that these alterations may be associated with certain oral CFS symptoms, etiology, and/or the course of the disease.
While Brain glial activation in fibromyalgia – A multi-site positron emission tomography investigation is a study of fibromyalgia, it may be significant in ME as well. Using PET brain imaging, researchers at Karolinska Institutet and Massachusetts General Hospital show that glial cells – the central nervous system’s immune cells – are activated in people with fibromyalgia. The PET scan used [11C]PBR28 as its radioligand. [11C]PBR28 binds to the translocator protein (TSPO), a protein upregulated in activated microglia and astrocytes.
This isn’t the first study to show signs of neuroinflammation in fibromyalgia: Shungu et al. used upregulated lactate as their marker for neuroinflammation, and compared lactate levels in people with ME and people with fibromyalgia. Both groups had elevated lactate, with levels in ME typically higher.
Mike VanElzakker is working on a neuroinflammation study that will use the same radioligand as Albrecht et al., meaning a comparison of results will be possible.
In Myalgic Encephalomyelitis (ME) or What? An Operational Definition, Twisk introduces an ‘operational definition’ of myalgic encephalomyelitis containing four elements: (1) muscle fatigability/post-exertional muscle weakness lasting for days; (2) operational criteria for “neurological disturbance, especially of cognitive, autonomic and sensory functions”; (3) fluctuation of symptoms; and (4) a prolonged relapsing course. Twisk starts from the foundation of Ramsay and reports on a survey with a significant number of patients — 420 — to reach his conclusions. The qualitative data is most interesting when he identifies patterns spotted across his group of patients, such as diurnal variation in symptoms, acute versus chronic phases, and qualitative differences between typical viral infection symptomology and ME. While the vast majority of patients identified ‘emotional lability’ as part of their symptom picture, Twisk notes that this is likely due to cerebral perfusion issues rather than being causative.
Chronic Fatigue Syndrome: From Chronic Fatigue to More Specific Syndromes is by two apparent newcomers to the field, Blitshteyn and P. Chopra. However, Blitshteyn has written about both POTS (postural orthostatic tachycardia syndrome) and EDS (Ehlers-Danlos Syndrome) which are common comorbidities with ME.
Blitshteyn and Chopra appear to be unfamiliar with diagnostic criteria beyond Fukuda, as they make the claim that “most illnesses” with chronic fatigue or chronic pain could easily be diagnosed as CFS or fibromyalgia (FM), and list the Fukuda criteria symptoms to support the claim. Blitskteyn and Chopra mention POTS, MCAS, EDS, and other disorders with pain and fatigue as major symptoms, and encourage clinicians to continue to investigate comorbidities and etiology that can lead to better care. Their chart of potential comorbidities is of interest.
Leaky brain in neurological and psychiatric disorders: Drivers and consequences is a paper from the Maes / Morris group, who often write about the oxidative stress model of neuroinflammation in a more general sense; ME is discussed here as one of several neurological diseases. The paper posits that increased inflammation leads to a ‘leaky’ blood brain barrier (BBB) through the same mechanisms that increase intestinal permeability (leading to ‘leaky gut‘).
Carmen Scheibenbogen of autoantibody research is back in this paper about viral infection in ME, Chronic viral infections in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Unfortunately, the paper contains numerous mistakes about ME etiology and prevalence. For example, the authors define Fukuda CFS as fatigue that lasts at least six months, though Fukuda requires at least four additional symptoms alongside chronic fatigue, skips over the Canadian Consensus Criteria, and state that ICC coined the name ‘myalgic encephalomyelitis’ (ME is the older name). This is one error of many.
What follows is a useful repository of studies on specific viral infections in ME, but be cautious of sticking with the authors’ interpretations of those studies given the mistakes early on.
Friedman, Mattey, and Faith Newton produced this study. Kenneth Friedman is a longtime advocate and clinician who has created or helped create several medical education courses in ME, and Faith Newton is an educator who has long examined accommodations for students with ME in the classroom. There are a few missteps: the article states that ME/CFS becomes lifelong only if “not managed properly”, and calls ME fatigue “medically unexplained”. (It might be less problematic to say the fatigue in ME is not due to other diagnosed conditions.) In general, however, the article gives a reasonable overview of the illness, debunking psychosomatic attribution and pointing to specific strategies school nurses can use help children with ME.
(See more about nursing and ME in science and medical news.
School Functioning in Adolescents With Chronic Fatigue Syndrome: Knight and colleagues examined the school functioning of students with ME. In the past, studies have mostly examined absenteeism in chronic illness, but Knight et al. examined additional factors such as classroom performance and connectedness to peers. Negative outcomes were shown in adolescents with ME that were directly proportional to both emotional symptoms and the severity of their fatigue. Interestingly, however, emotional symptoms did not correlate to school absence or academic performance; but severity of fatigue correlated to school absence, quality of life in the school setting, school participation, school connectedness, and academic performance.
Evaluation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) education materials in local health departments have released a study that evaluated the availability of ME educational materials in health departments. This study took place in 18 states, and the goal of their evaluation was to identify the means by which health departments provide information on ME to both patients as well as providers. They concluded that 92% of the health departments that they evaluated had no materials on ME. However, nearly 3/4 had heard of ME/CFS and 90% expressed interest in receiving materials on the disease and learning more.
In Confirmatory factor analysis of a myalgic encephalomyelitis and chronic fatigue syndrome stigma scale, by Lenny Jason’s group, researchers polled over 500 people “with myalgic encephalomyelitis or chronic fatigue syndrome”. The aim of this study was to determine a stigma scale for those affected by ME/CFS and assess three areas of stigma: estrangement, psychological attribution, and disclosure. After surveying several hundred ME patients via convenience sampling, this study found that people with ME experience high levels of stigmatization. Researchers posit that medical education may be one way to reduce stigma. It’s interesting to note that this is stigma from the perspective of the stigmatized — it makes me curious to know what we’d hear from clinicians or the general public.
The development of an instrument to assess post-exertional malaise in patients with myalgic encephalomyelitis and chronic fatigue syndrome outlines a tool called the DePaul Post-Exertional Malaise Questionnaire created by Lenny Jason‘s group. The tool characterizes post-exertional malaise, often said to be the cardinal symptom in people with ME. The same group created the DePaul Symptom Questionnaire (often called ‘The DePaul Questionnaire’), a survey tool developed to identify people with Canadian Consensus Criteria ME/CFS.
In Unraveling the Molecular Determinants of Manual Therapy: An Approach to Integrative Therapeutics for the Treatment of Fibromyalgia and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Spanish researchers Espejo and colleagues reviewed the physical benefits of manual therapy (MT), which is considered to be any type of physical manipulative therapy (such as massage), and proposed a molecular physiotherapy approach to elaborate on the biomedical benefits of MT. This review proposes that on a molecular level MT may benefit people with ME and FM in part by stimulating muscles sans exercise. The authors refer to objectively measurable data to create a framework of evidence for the efficacy of MT, such as gene expression and cytokine studies. An interesting paper with potentially useful therapeutic implications.
Conferences, presentations & talks
Second annual ME/CFS Stanford Symposium, funded by the Open Medicine Foundation
This year’s second annual Stanford Symposium was held in late September and featured talks from the following researchers:
- Ronald W. Davis, PhD: shared opening remarks and discussed his current research; more specifically focusing on biomarkers for ME as well as current technological advancements.
- Maureen Hanson, PhD: has been taking a closer look at metabolism and genetic expression of those with ME. She was excited to announce her upcoming metabolomics study.
- Jonas Bergquist, MD, PhD: summarized his initial findings regarding markers for neuroinflammation in healthy controls versus people with ME and MS. He has also been working on a project involving neurosteroid levels.
- Wenzhong Xiao, PhD: reviewed extensive and interesting results from the Severely Ill Patient Study.
- Alain Moreau, PhD: MicroRNA response following a stimulation.
- Ronald G. Tompkins, MD, ScD: is a part of Harvard’s research collaboration and aims to investigate muscle recovery in those with ME.
- Jarred Younger, PhD: discussed his findings on neuroinflammation in the brains of people with ME. He found high amounts of lactate in certain areas of the brain of those with ME.
- Øystein Fluge, MD, PhD: was the keynote speaker of the symposium and although he did not give details regarding the Rituximab trial, he did go over interesting points regarding his current clinical trial.
- Michael Sikora: a graduate student who has been investigating the difference in T cells in people with ME as opposed to other chronic illnesses.
Video links to the symposium presentations can be found here and a full review of the presentations can be seen here.
The 2018 UK CMRC ME conference was held in mid-September. The aim of the conference was to inform the public on current research, allow for networking of professionals and people with ME, and to encourage conversation. Doctors and professors gave updates on their current research and ideas for future projects. However, the lack of funding that ME research receives as a whole was mentioned by nearly all advocates, and this will continue to be a roadblock for ME research until it receives the attention it deserves.
View the full conference report by clicking here.
Dr. Charles Shepherd gives an hour-long presentation including details regarding current ME research in the UK, current disease management options, and the direction of future research. You can watch Shepherd’s talk by clicking here.
Dr. Tuller is an academic researcher, and journalist at the University of California, Berkeley. On Tuesday, October 23, Sheffield ME and Fibromyalgia Group invited Dr. Tuller to speak on the integrity of clinical trials in ME. Tuller has thoroughly investigated the PACE trial and has come to question the validity of the results. The live stream of his talk can be viewed by clicking here (and don’t worry — the video rights itself after a minute or two!)
The Swedish patient organization Riksförbundet för ME-patienter (RME), held a two day conference in mid-October that featured talks from researchers, doctors, and politicians. The aim of the conference was to start a roundtable discussion with the local scientific community. Comments and video links from the conference can be viewed here.
The Hope 4 ME & Fibro annual conference took place this September and featured keynote speakers Dr. Montoya from Stanford University, Dr. Rowe from John Hopkins University, and Dr. Speight. Dr. Montoya delivered a speech titled “An Unfolding Story of Scientific Discoveries and Future Targeted Treatment” and spoke about his experiences with patients as well as his extensive clinical research to improve diagnosis and treatment. Dr. William Weir gave a presentation titled “The Diagnostic Dilemma” and representatives from the patient and client council reported on the progress they have made while working with ME advocates. Joan McParland organized. Click here for videos and more information.
SMCI hosted a webinar from Lenny Jason entitled Appropriately and Accurately Assessing Symptoms in Patients with ME.
Dr Jason discusses one of his recent studies in which he determined that 5% of college-age individuals who tested positive for mono later went on to develop ME. Those who developed ME had significantly altered levels of the cytokines IFN-ɑ, IL-17a, and IL-12p70, which have been found ‘off’ in other cytokine studies of ME previously.
Jason emphasizes that we have no good measure of whether a symptom is ‘serious enough’ to be considered part of the illness-picture. It’s easy for clinicians without a background in ME to look at diagnostic criteria and note how many symptoms involved in diagnosis are common in the general population. This can add to disbelief and increase stigma. That makes severity of each symptom a vital consideration.
There’s a lot more to this hour-long talk — check it out!
Professor Peter Rowe and Dr. Nigel Speight Share their thoughts on adolescent ME:
ME pediatricians Prof. Peter Rowe and Dr. Nigel Speight are featured in two short videos that discuss the diagnosis and treatment for ME in young adults. The full-length videos can be viewed the Voices from the Shadows website.
Llewellyn King interviews Dr Susan Levine in this 25-minute video. Levine is a clinician who sees people with ME out of her New York City office. She is also engaged in multiple research collaborations. Levine discusses the different subtypes of ME she sees in clinic, and the treatments she uses. Watch the video here.
Bruce Levin
, a biostatistics lecturer at Columbia University, gave the lecture How not to conduct a randomized clinical trial this September, discussing best practices on planning and conducting a clinical trial using CBT and GET trials in ME as poor examples. A pdf of the presentation can be found here.
Research and medical news
ME organization news
Solve ME/CFS announced their Ramsay grant award winners: Jonas Blomberg, Vincent Lombardi, Theoharis Theoharides and Liz Worthey.
Blomberg’s group will be working on mitochondrial research, including antibodies to mitochondria and shifts in metabolism caused by alterations in mitochondrial function. Lombardi’s group will be examining JAK (janus kinase) function in different kinds of immune cells in people with ME. Theoharides will be looking at extracellular vesicles and their effects on mast cells and microglia. And Worthey’s project will involve using whole-genome sequencing to help elucidate a genetic basis for ME.
The Open Medicine Foundation (OMF) has helped fund the creation of another collaborative research center for the study of ME. Harvard Medical School along with Massachusetts General Hospital (MGH), Brigham and Women’s Hospital (BWH), & Beth Israel-Deaconess Medical Center (BIDMC) are working together to form an international team of medical professionals who are dedicated to solving ME. You can find the full faculty listing as well as more information on the collaboration here.
Emerge Australia recently announced that they released a survey of the Australian ME community. The survey, which netted over 600 responses, identified key issues for Australians living with ME. Emerge created a 77-page report that summarises the results. Key findings included that “most ME/CFS sufferers [89%] stated that they felt worse after increasing exercise and/or activity” and that “very few (5%) reported that increasing activity or exercise helped them feel better.” You can see their findings summarised as an infographic here.
Charlotte Stevens organized the ME Association’s annual report. The report summarized the 5th annual CMRC conference held in Bristol this past September (2018) with a quick run-down of each talk. (See Conferences, above).
Congratulations to Science for ME on celebrating its first year! S4ME aims to be driven by the voices of their members; they welcome intriguing posts and thought-provoking comments from all members. S4ME has also set up voting polls to eligible members, to include those with voting rights in important forum-related decisions. They were also glad to announce that they have achieved adequate funding for the stability of the site. In the coming years, S4ME has stated a few goals that they will strive to achieve with the help of the forum community: “to facilitate patient education, to expand [their] initiative to connect patients and researchers, to have an impact, and to be a model.”
Medical care and alphabet organizations
UptoDate, a website that is commonly used by practitioners, made some alterations to its website discussing ME/CFS — thanks to Webdog for his advocacy on this! As many websites and organizations have before them, UptoDate unfortunately downgraded graded exercise therapy and cognitive behavioral therapy recommendations rather than removing them. Whereas before, CBT and GET were listed as best evidence, now UptoDate says that “some patients” may benefit, but that in others “CBT and GET can trigger post-exertional malaise and worsening of symptoms.”
Behind a paywall but quoted here.
The Centers for Disease Control (CDC) awarded the National Association of School Nurses (NASN) a $1.3 million, three-year contract to educate and support the school nurse workforce to conduct national active surveillance among U.S. school children for chronic conditions, including ME, and characterize the association of these chronic conditions with chronic school absenteeism and school withdrawal.
A survey by the Tymes Trust in the UK in the 1990s concluded that ME was the main cause of absence in young people. It will be interesting to see if this is actually the case in the US, where the diagnostic criteria in general use are stricter than in the UK.
You can read more about the grant here.
On August 27th, #MEAction published a petition calling for the CDC to immediately halt its plan to issue a sole-source contract – meaning there was no true competitive bidding process in place – to the Pacific Northwest Evidence-based Practice Center (EPC). This same contractor had made mistakes in their previous work on ME, and an #MEAction petition asking the process be re-opened gained over 8,000 signatures.
On September 8th, the CDC suddenly reopened the contract as a competitive bid proposal. The CDC did not advertise that it had issued a new solicitation, and the community only found out about the new deadline a couple of days before the due date.
#MEAction reached out to the New York State Department of Health (NYSDOH) AIDS Institute about working together to submit a bid for the contract to conduct a literature review of ME, and they agreed.
We had less than 48 hours to submit our bid. Luckily, we work and volunteer with amazing advocates! We reviewed the application late into the night, others proofreading in the morning. Two volunteers near Atlanta – one being the incredible Elizabeth Burlingame – drove an hour to personally hand in our application to the CDC to meet the abrupt deadline.
Finally, the CDC has agreed to a meeting with #MEAction representatives to discuss additional changes to their website as per #MEAction’s initial write-up plus community feedback.
According to Jennie Spotilla, NIH funding towards ME research are down 17% since the 2017 fiscal year. Nearly $2 million fewer dollars were spent on ME research in 2018 than the previous year. It has also been estimated that this number will only get worse as 2019 approaches unless advocates take action.
The NIH’s telebriefing on ME research was held on October 23. A variety of topics were discussed including future research plans, current advancements, and updates on events to come next year. A question and answer session was also held. The full briefing and a transcript can be found here.
NICE published their Final scope and equality impact assessment in mid-October. The work is massive, but you can find commentary here.
Far more worryingly, NICE announced that it had chosen the committee members who would help craft the NICE guidelines for ME shortly thereafter. While there are excellent clinicians and advocates on the committee– and expert advisors including Charles Shepherd and Jonathan Edwards — there are several members whose presence is worrying, including Gabrielle Murphy, a co-author of PACE; Chris Burton, who is a believer in MUS and who has only ever published one paper on ME; and Alan Stanton, who is best known for recommending a young person with ME be sectioned. The advocates and clinicians on the NICE committee have their work cut out for them.
#MEAction UK staff and volunteers produced a response, but that is a science update for November!
Finally, the Cochrane review on ME/CFS was temporarily withdrawn to reconsider its findings in the wake of numerous scientific and medical objections to its content. David Tuller reported.
In response, Reuters released an article claiming that the review was withdrawn due to patient pressure — a narrative with which the ME community is all too familiar. The author of the article has written negatively about marginalized groups before, and has been engaged to produce work for the Science Media Centre in the past.
The withdrawal message Cochrane released explicitly mentioned that the review was withdrawn not due to social pressures but concerns about the quality of the cited research:
This review is subject to an ongoing process of review and revision following the submission of a formal complaint to the Editor in Chief. Cochrane considers all feedback and complaints carefully, and revises or updates reviews when it is appropriate. The review author team have advised us that a resubmission of this review is imminent. A decision on the status of this review will be made once this resubmission has been through editorial process, which we anticipate will be towards the end of November 2018.
Over 40 scientists and clinicians signed a letter thanking Cochrane for doing the right thing.
Scientists, clinicians and advocates will be waiting for the end of November. Hopefully, Cochrane will read and judge the work on its scientific merits alone.
Changes in diagnostic coding
SNOMED
October 1, SNOMED CT UK Edition first became available from the NHS Digital public version of the SNOMED CT browser. SNOMED is a standardized electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, and procedures. Since April 2018, SNOMED CT UK Edition has been the mandatory terminology system for use in primary care in the UK.
In the past, chronic fatigue syndrome was located under the parent concept ‘Multisystem disorder’ in SNOMED CT UK. However, this category was retired in January of this year. There were many other diseases that fell under this category, and most of them were reassigned to a new category when ‘Multisystem disorder’ was retired. However, CFS was not moved, meaning it belonged to no category at all for much of 2018.
In February 2018, the proposal was put forth that CFS be placed in a category called ‘Disorder of the Nervous System’, which matches the WHO’s assessment that CFS and ME are ‘disorders of the central nervous system’. This recategorization was approved in July and published this October. This same reclassification was approved and published in the US SNOMED the month before (September 2018); and the Canadians incorporated the new classification as of October 30, 2018.
ICD coding changes on the horizon
Changes in classification have been proposed within the ICD, or the International Classification of Diseases:
Proposed item changes under G93 – other disorders of the brain
- The title for G93.3 classification changed from Postviral to Postviral and other fatigue syndromes
- Benign Myalgic Encephalomyelitis changed to Myalgic Encephalomyelitis with new code – G93.32
- Switch chronic fatigue syndrome from R53.82 to new code – G93.33
- New item for systemic exertion intolerance disease with code G93.30
- New code for other postviral and related fatigue syndromes – G93.39
In the World Health Organization’s ICD-10, ME and CFS are already both classed as neurological. This is the case in the Canada-specific and Germany-specific versions of the ICD as well.
However, in the US-specific version, CFS currently falls under malaise and fatigue within the Symptoms chapter, instead. The US is the only country in which the ICD-10 classifies CFS as a symptom instead of a neurological disease or disorder.
More controversially, the proposed changes would give the SEID criteria an official diagnostic code, separate from ME or CFS but still under neurological and placed within a shared category: ‘Other disorders of the brain’. This would mean that CFS, ME, and SEID would be three, separate diagnoses all under the neurological umbrella, each with their own diagnostic code. You can learn more in this thread, which explores the different points of view on the matter.
And here let’s take a moment to acknowledge Suzy Chapman’s retirement from ME advocacy and activism. Known on Phoenix Rising and Science 4 ME as ‘Dx Revision Watch’, Chapman’s vital role in advocacy was to keep an eye on and document shifts in ICD and SNOMED and report back to the community. Her contributions will be missed!
Science advocacy news
Kathriana Weber writes a short article about ME. She reflects on negative aspects of the Netflix series “Afflicted,” and then uses quotes from scientists such as Dr. Montoya to explain the symptoms experienced by those who suffer from the disease. The article is in German, but you can check out an English translation here.
Per Fink, Columbia University, and the Psychosomatics Conference
Per Fink was invited to speak at the 4th Annual Psychosomatics Conference hosted by the New York State Psychiatric Institute and Columbia University Irving Medical Center in New York City on Oct. 20th. Per Fink was the director of the clinic that held Karina Hansen against her will, leading to over three years of imprisonment. He was also one of the early hysteria theorists in ME research, and one of the original supporters of the idea of ‘medically unexplained symptoms’ (MUS) as a catch-all for dozens of different illnesses. Fink now campaigns for ‘bodily distress syndrome’, which is fundamentally similar to MUS. Read more of #MEAction’s summary of Per Fink and why his research harms people with ME here.
ME advocates and activists including Terri Wilder and David Tuller immediately sent letters to the Psychosomatics Conference asking them to disinvite Per Fink, but received boilerplate, identical responses. Landa, a conference representative, stated she understood ME/CFS is a real disease, and offered the reassurance that the Psychosomatics Conference “will not focus on ME/CFS”. Of course there was the distinct possibility that it would come up in the context of Fink’s previous work, whether it was the focus of the conversation or not.
#MEAction launched a petition that gained over 10,000 signatures and held an in-person protest against Per Fink’s invitation to Columbia University, where Columbia’s Center for Infection and Immunity investigates the biological disease ME, and has directly stated that ME is not a psychosomatic illness. Unfortunately, Columbia University’s Irving Medical Center continued to support Fink’s right to present his opinion for continuing medical education credits.
After Columbia’s Center for Infection and Immunity (CII) released an initial, generalized statement discussing the embodied nature of myalgic encephalomyelitis, Per Fink posted a statement on the Aarhus University webpage espousing his views and shaking his finger at the community for using Karina’s private medical information — information she and her family had explicitly given the advocacy community permission to use. A summary of all actions and information up to the protest itself can be found here.
Clinicians, scientists, and advocates attended the conference to challenge Fink’s theories and to highlight his role in Hanson’s involuntary institutionalization while others protested outside, picketing, handing out flyers, holding banners, and making their voices heard. New York State Senator, Brad Hoylman, attended the protest to lend support to people with ME. “We need to ground research in ME based on biological causes and that’s why I am here today to stand up for the activists, to stand up for the patients,” he said.
Donny Moss, an able-bodied ally, challenged Fink at the conference, saying: “Spreading this misinformation about people with ME is reckless. When people with ME are under attack, what do we do? Stand up, fight back!” He was tackled even though he was cooperating with security. He then rejoined the picket line outside.
Continue to combat medical disinformation by helping with the Unrest continuing medical education campaign.
Books & media
An Adolescent’s Guide to ME/CFS: Chronic Fatigue Syndrome was published this September (2018) by a young editor at the Californian. Vidhima Shaday writes to young adults who struggle with understanding how to live with their chronic illness. Her book began as an article that aimed to educate readers on the disease and has since evolved into her very first book on the subject. Vihima states that her hope is that “this book will help raise awareness and funding for research dedicated to finding a cure for the disease.”
In Classic Pacing: a Better Life with ME, Ingebjorg Midsem Dahl guides those looking for instruction on how to pace more effectively or for those who are just getting started. It is in its fourth edition and has just been released in English. The book is available for purchase on Amazon.
Makers of the film Voices From the Shadows accepted the Wellcome Public Engagement funding award for their current project Dialogues From a Neglected Illness. The finished product will consist of a comprehensive website that features short videos and other information regarding ME. The new project is expected to be finished within the next 18 months.
And that’s it for September and October, everyone! Keep reading and keep researching…
1 thought on “Sept & Oct — Research Roundup”
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