May 12 Letter to the World Health Organization

Note: Following is a letter sent to the WHO by The International Alliance for M.E. to increase international recognition of and funding for ME/CFS. You can read a PDF file of the letter HERE.

Dr Tedros Adhanom Ghebreyesus
World Health Organisation
Avenue Appia 20
1202 Geneva

11 May 2018
CC Dr Svetlana Akselrod, Assistant Director General for Non-Communicable Diseases and Mental Health

Dear Dr Tedros

Urgent action to address M.E. globally: a neglected NCD

Tomorrow, on 12th May, people across the globe will come together in public spaces, at government buildings, online and in their homes to ask: ‘Can you see M.E. now?’ You can see their films, photographs and stories, shared for this global M.E. Awareness Day event, at  http://www.facebook.com/MEActNet and www.twitter.com/IAforME

M.E. (Myalgic Encephalomyelitis) is a complex, disabling, chronic, fluctuating, neurological condition of unknown aetiology. It is sometimes diagnosed as Chronic Fatigue Syndrome or CFS/M.E. It is a disease which affects 20,000,000 individuals of all ages and from all
ethnic groups – and the families around them – causing significant personal, social and economic hardship.

The US government’s landmark report, Beyond M.E./CFS: redefining an illness, made it clear that M.E. is ‘a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts.’1

M.E. is associated with neurological, immunological and energy-metabolism impairment, and is characterised by significant disability and a widespread intolerance to even small amounts of
mental and physical exertion. Other symptoms include sleep dysfunction, dizziness, widespread pain, cognitive dysfunction, and sensitivity to light and sound. We know that:

* one in four people with M.E. are so severely affected that they are unable to leave their beds or homes, sometimes for many years, too ill to bear even the touch of a loved one
* M.E. has the lowest health-related quality-of-life score when compared to cancer, diabetes, lupus, stroke, heart disease and chronic renal failure2
* people with M.E. are at an increased risk of cancer, heart disease, and suicide3
* in children and young people, the disease is the most common cause
of long-term school absence.4

Despite this suffering and disability, and the urgent need to find effective treatments, only 0.02% of international mainstream research funding has been directed towards M.E.5 Moreover, the condition is frequently undiagnosed, misdiagnosed and/or mistreated by physicians and often not recognised by national treatment and health insurance systems.

The International Alliance for M.E.’s awareness event on 12th May in Geneva, just one of thousands of Millions Missing6 events across the world, is part of our work to highlight the challenges faced by people with M.E.

We would greatly appreciate it if you could make time in your busy schedule to meet representatives from the International Alliance for M.E., a new collaboration uniting M.E. organisations in the US, Australia, Spain, Japan, South Africa and the UK. We would like to highlight the serious and significant impact of this often unrecognised condition, and explain why we are seeking urgent national and international action to increase research on the condition and ease the suffering of patients around the world.

We hope that, with the support of Members States and WHO, we will:

1. Recognise M.E. as a ‘serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients’7 and adopt measures to provide a global and co-ordinated public health response to it.
2. Put in place transparency and a consultation process with M.E. organisations and patients on decisions related to M.E.
3. Support accelerated biomedical research to develop better diagnostic methods and treatments for M.E.
4. Ensure appropriate medical education for professionals working with M.E. patients.

As advocates, organisations, patients and carers, the International Alliance for M.E. is determined to see the condition properly recognised and treated, working with scientists and researchers across the world. We very much hope for your support for people living with M.E.

In the hope of your favorable reply to our invitation to meet,

Yours sincerely

The International Alliance for M.E.
ACAF – Associacio Catalana d’Afectades i Afectats de Fibromialgia i d’altres Sindromes de Sensibilitzacio Central, Spain
Action for M.E., United Kingdom
The American ME and CFS Society, United States
Emerge Australia, Australia
Forward ME, United Kingdom
Japan ME Association, Japan
ME CFS Foundation South Africa, South Africa
Plataforma Familiars Fm-SFC-SQM, Spain
Solve ME/CFS Initiative, United States

With support from
Association du Syndrome de Fatigue Chronique, France
Lost Voices Stiftung (Foundation), Germany
#MEAction, United Kingdom
ME/CFS Association Switzerland/Verein ME/CFS Schweiz, Switzerland
ME/FM Society of BC, Canada
ME Research UK, United Kingdom
Millions Missing Canada, Canada
Millions Missing France, France
National ME/FM Action Network, Canada
Open Medicine Foundation, United States
Welsh Association of ME & CFS Support (WAMES), United Kingdom

——–
1 Institute of Medicine (2015) Beyond M.E./CFS: redefining an illness
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
2 Hvidberg et al (2015) The Health-Related Quality of Life for
Patients with ME/CFS. PLoS ONE
3 Dimmock at al (2016) Estimating the disease burden of ME/CFS in the
United States and its relation to
research funding. Journal of Medicine and Therapeutics
4 Dowsett and Colby (1997) Long-term sickness absence due to ME/CFS in
UK schools; an epidemiological
study with medical and educational implications. Journal of Chronic
Fatigue Syndrome
5 Chowdhury and Radford (2016) M.E./CFS research funding
http://www.actionforme.org.uk/uploads/pdfs/mecfs-research-funding-report-2016.pdf
6 https://millionsmissing.meaction.net
7 Institute of Medicine (2015) Beyond M.E./CFS: redefining an illness
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

——–
(c) 2018 IAME

The putative role of oxidative stress and inflammation in the pathophysiology of sleep dysfunction across neuropsychiatric disorders: Focus on chronic fatigue syndrome, bipolar disorder and multiple sclerosis

Abstract:

Sleep and circadian abnormalities are prevalent and burdensome manifestations of diverse neuro-immune diseases, and may aggravate the course of several neuropsychiatric disorders. The underlying pathophysiology of sleep abnormalities across neuropsychiatric disorders remains unclear, and may involve the inter-play of several clinical variables and mechanistic pathways.

In this review, we propose a heuristic framework in which reciprocal interactions of immune, oxidative and nitrosative stress, and mitochondrial pathways may drive sleep abnormalities across potentially neuroprogressive disorders. Specifically, it is proposed that systemic inflammation may activate microglial cells and astrocytes in brain regions involved in sleep and circadian regulation. Activated glial cells may secrete pro-inflammatory cytokines (for example, interleukin-1 beta and tumour necrosis factor alpha), nitric oxide and gliotransmitters, which may influence the expression of key circadian regulators (e.g., the Circadian Locomotor Output Cycles Kaput (CLOCK) gene). Furthermore, sleep disruption may further aggravate oxidative and nitrosative, peripheral immune activation, and (neuro) inflammation across these disorders in a vicious pathophysiological loop.

This review will focus on chronic fatigue syndrome, bipolar disorder, and multiple sclerosis as exemplars of neuro-immune disorders. We conclude that novel therapeutic targets exploring immune and oxidative & nitrosative pathways (p.e. melatonin and molecular hydrogen) hold promise in alleviating sleep and circadian dysfunction in these disorders.

Source: Morris G, Stubbs B, Köhler CA, Walder K, Slyepchenko A, Berk M, Carvalho AF. The putative role of oxidative stress and inflammation in the pathophysiology of sleep dysfunction across neuropsychiatric disorders: Focus on chronic fatigue syndrome, bipolar disorder and multiple sclerosis. Sleep Med Rev. 2018 Apr 4. pii: S1087-0792(17)30152-1. doi: 10.1016/j.smrv.2018.03.007. [Epub ahead of print]  https://www.ncbi.nlm.nih.gov/pubmed/29759891

Markey Leads Resolution Recognizing ME/CFS

Press Release: Washington (May 15, 2018) – Senator Edward J. Markey (D-Mass.) was joined by Senators Chris Van Hollen (D-Md.), Angus S. King Jr. (I-Maine), and Susan Collins (R-Maine) in introducing a Senate resolution recognizing May 12 as International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). ME/CFS is a chronic, debilitating condition without a known cause, diagnostic, treatment, or cure. It may affect up to 2.5 million Americans and is estimated to be four times more prevalent in women than in men. ME/CFS costs the economy up to $24 billion a year, due to medical expenses and loss of productivity.

“ME/CFS has been in the shadows for too long,” said Senator Markey. “Our resolution is just one step to help shine light on this condition and what we can collectively do to help improve the quality of life of those impacted. I am inspired by the commitment from individuals living with ME/CFS and their loved ones to change the trajectory of this disease, and am honored to help raise awareness of their efforts with Senators Van Hollen, King, and Collins with this resolution.”  

Over the last several years, the National Institutes of Health (NIH) reorganized the Trans-NIH ME/CFS Working Group. Last year, the NIH awarded more than $7 million in grants to help establish Collaborative Research Centers and a Data Management Coordinating Center to enhance and coordinate research initiatives for ME/CFS throughout the NIH.

You can read the full resolution HERE.

Millions Missing Demonstrations – in Pictures

On May 12, 2018, Millions Missing demonstrations were held in over a dozen countries. Over 100 cities participated, bringing the plight of ME/CFS patients to the attention of media, public officials, and health organizations all over the world. The demands of Millions Missing are simple: Fund research, find a cure. Here is a small sampling of images from the May 12 protests. (You can find more photos HERE.)

 

UNITED STATES

Washington, DC

New York City

New York City

San Francisco

Los Angeles

Seattle

Morristown, NJ

Atlanta

UNITED KINGDOM

Southampton

London

Bristol

Manchester

Edinburgh, Scotland

EUROPE

Geneva, Switzerland

Copenhagen, Denmark

Bilbao, Spain

Helsinki, Finland

Gothenburg, Sweden

DOWN UNDER

Melbourne, Australia

Sydney, Australia

Christchurch, New Zealand

WORLD

Mexico City

 

Tokyo, Japan

Montreal Conference a Hit!

By Courtney Craig, D. C.

This May 3rd to May 5th marked the first annual Canadian Collaborative Team Conference at the CHU Sainte-Justine Hospital, Montreal. The conference brought together American and Canadian, patient and clinician, scientist and activist. Collaboration was indeed a major theme—with a focus on leveraging innovation to advance ME/CFS research. Day 1 introduced clinicians to the diagnosis and management of ME/CFS. Speakers stressed the importance of refining the diagnostic process. An accurate diagnosis was deemed the most important factor in patient care and in some cases is therapeutic. Canadian Clinicians presented a unique multidisciplinary approach with the establishment of large centers focused on the complex multi-system needs of patients.

A research-heavy day followed with parallel patient-centered sessions. Here, advocacy groups came together to brainstorm new projects in a post-Unrest ME/CFS world. Projects beyond May 12th and Millions Missing were suggested to continue the campaign throughout the year. Medical school education, leveraging technology and social media, legislative persistence, and education events targeted to industry, lawmakers, and philanthropists were all suggested.

Continue reading “Montreal Conference a Hit!” →

Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome

Abstract:

Prior research has found a heightened risk of suicide in patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). It is possible that a number of factors including stigma, unsupportive social interactions, and severe symptoms could lead to the development of depression, suicidal ideation, and heightened risk of suicide in this patient population. Prior studies have indicated that patients often report the legitimacy of their illness being questioned by family, friends, and even their physicians. This study aimed to determine whether stigma experienced, social support, symptomology, and functioning may be associated with depression and endorsement of suicidal ideation (SI) in patients with a self‐reported diagnosis of ME or CFS.

Findings indicated that participants that endorsed both SI and depression, in contrast to those that did not, experienced more frequent unsupportive social interactions in the form of blame for their illness, minimization of its severity, and social distancing from others. In addition, 7.1% of patients with ME and CFS endorsed SI but do not meet the criteria for clinical depression. These findings highlight the importance of stigma and unsupportive social interactions as risk factors for suicidal thoughts or actions among patients with ME and CFS. Community psychologists have an important role to play in helping educate health care professionals and the public to these types of risk factors for patients marginalized by ME and CFS.

Source: Stephanie L. McManimen, Damani McClellan, Jamie Stoothoff, Leonard A. Jason. Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. Journal of Community Psychology, May 2018. https://doi.org/10.1002/jcop.21984

VIDEO: M.E. and me | BBC Newsbeat

ME sufferer Emma Donohoe investigates how young people cope with the debilitating illness, of which symptoms can include devastating fatigue, digestion issues and brain fog. It comes as current treatments for the condition are being reviewed, after years of controversy.

Patients with chronic fatigue syndrome do not score higher on the autism-spectrum quotient than healthy controls: Comparison with autism spectrum disorder

Abstract:

Clinically, there is an overlap of several symptoms of chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD), including fatigue; brain “fog”; cognitive impairments; increased sensitivity to sound, light, and odour; increased pain and tenderness; and impaired emotional contact.

Adults with CFS (n = 59) or ASD (n = 50) and healthy controls (HC; n = 53) were assessed with the Autism-Spectrum Quotient (AQ) in a cross-sectional study. Non-parametric analysis was used to compare AQ scores among the groups. Univariate analysis of variance (ANCOVA) was used to identify if age, sex, or diagnostic group influenced the differences in scores. Patients with ASD scored significantly higher on the AQ than the CFS group and the HC group. No differences in AQ scores were found between the CFS and HC groups. AQ results were influenced by the diagnostic group but not by age or sex, according to ANCOVA. Despite clinical observations of symptom overlap between ASD and CFS, adult patients with CFS report few autistic traits in the self-report instrument, the AQ. The choice of instrument to assess autistic traits may influence the results.

Source: Bileviciute-Ljungar I, Maroti D, Bejerot S. Patients with chronic fatigue syndrome do not score higher on the autism-spectrum quotient than healthy controls: Comparison with autism spectrum disorder. Scand J Psychol. 2018 May 8. doi: 10.1111/sjop.12451. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29738079

Task Related Cerebral Blood Flow Changes of Patients with Chronic Fatigue Syndrome: An Arterial Spin Labeling Study.

Abstract:

PURPOSE: One hallmark of chronic fatigue syndrome (ME/CFS) is task related worsening of fatigue. Global brain hypoperfusion, abnormal regional activation, and altered functional connectivity of brain areas associated with cognition and memory have been reported but remain controversial.

METHODS: We enrolled 17 female participants fulfilling the CDC Criteria for ME/CFS and 16 matched healthy controls (HC). Using a 3T-Phillips Achieva MRI-scanner, pseudo-continuous arterial spin-labeling (pCASL), was used to study the dynamics of regional cerebral blood flow (rCBF) and their relationship to mental fatigue in ME/CFS patients and HC during a demanding cognitive task, i.e. modified Paced-Auditory-Serial-Addition-Testing (PASAT).

RESULTS: ME/CFS subjects reported more fatigue than HC at baseline (p < .01). Global brain perfusion of ME/CFS and HC subjects was similar at rest. The PASAT resulted in significantly increased fatigue in ME/CFS participants and HC. Although not different between groups, overall CBF significantly increased over the first 3 min of the PASAT and then decreased thereafter. Regional CBF (rCBF) changes were significantly different between groups during the post-task recovery period. Whereas improvement of fatigue of ME/CFS subjects was associated with decreased rCBF in both superior temporal gyri (STG), precuneus, and fusiform gyrus, it was associated with increased rCBF in the same areas in HC.

CONCLUSIONS: Our results suggest that ME/CFS is associated with normal global CBF at rest and during a strenuous task (PASAT); however rCBF of several brain regions associated with memory, goal-oriented attention, and visual function was differentially associated with recovery from fatigue in ME/CFS patients and HC.

Source: Staud R, Boissoneault J, Craggs JG, Lai S, Robinson ME. Task Related Cerebral Blood Flow Changes of Patients with Chronic Fatigue Syndrome: An Arterial Spin Labeling Study. Fatigue. 2018;6(2):63-79. doi: 10.1080/21641846.2018.1453919. Epub 2018 Mar 20. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5914525/  (Full study)

Experts Gather in Montreal to Develop International Research Agenda on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

MONTREAL, April 25, 2018 /PRNewswire/ – International experts will participate in the first-ever Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Canadian Collaborative Team Conference on May 3–5, 2018 at CHU Sainte-Justine.  The conference will bring together 250 researchers and healthcare professionals from various disciplines to develop an international research agenda for this debilitating disease, for which there is no known cause or effective treatment.

“I am extremely encouraged by the interest shown by leading researchers and clinicians, who recognize the importance of establishing research priorities that will advance our understanding of ME/CFS and identify new strategies for treating patients,” says Dr. Alain Moreau, Head, Viscogliosi Laboratory in Molecular Genetics of Musculoskeletal Diseases, CHU Sainte-Justine Research Center and Scientific Chair of the Conference.

The conference will focus on:

  • Methods to properly diagnose patients with ME/CFS;
  • The role of biomarkers in diagnosing ME/CFS;
  • Benefits of establishing a biobank to advance research;
  • Ways to improve clinical care for ME/CFS patients; and
  • How to initiate, support, sustain and advance research on ME/CFS.

“There is an urgent need to get to the bottom of this devastating disease. To do this, we need many people looking at it from different perspectives and sharing as many ideas as possible so that we are better able to understand ME/CFS at the molecular level,” explains Dr. Ronald Davis, Professor, Biochemistry and Genetics and Director, Stanford Genome Technology Center.

Speakers include Dr. Jonas Bergquist, Professor, Uppsala University; Dr. Alison C. Bested, Clinical Director, Institute for Neuro-Immune Medicine at Nova Southeastern University; Dr. Peter Rowe, Director, Children’s Center Chronic Fatigue Clinic, Johns Hopkins University; Dr. Eleonor Stein, Clinical Assistant Professor, Department of Psychiatry, University of Calgary; and Dr. Derya Unutmaz, Professor, The Jackson Laboratory.

The conference is made possible through the support of the Canadian Institutes of Health Research and other partners.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
While severe chronic fatigue is one well-known symptom, ME/CFS affects a person’s cognitive and physical abilities and primarily strikes the neurological, endocrine and immune systems. A 2015 Statistics Canada unpublished Canadian Community Health Survey (CCHS) reports that just over 560,000 patients were diagnosed with ME/CFS, an increase of 37.6% from 2014.  In Quebec, tens of thousands of individuals are affected. ME/CFS is recognized by the World Health Organization.

To view the program, click here.