ME/CFS linked to imbalanced microbiome

Posted on 04/27/2017 by wames

Columbia University Mailman School of Public Health Press release, 26 April 2017: Chronic fatigue syndrome linked to imbalanced microbiome

Scientists identify abnormal levels of specific gut bacteria in individuals with chronic fatigue syndrome, including those with and without co-morbid IBS

Scientists at the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health have discovered abnormal levels of specific gut bacteria related to chronic fatigue syndrome/myalgic encephalomyelitis, or ME/CFS, in patients with and without concurrent irritable bowel syndrome, or IBS. Findings are published in the journal Microbiome.

The study is among the first to disentangle imbalances in the gut bacteria in individuals with ME/CFS and IBS. ME/CFS is a complex, debilitating disorder characterized by extreme fatigue after exertion and other symptoms including muscle and joint pain, cognitive dysfunction, sleep disturbance, and orthostatic intolerance. Up to 90 percent of ME/CFS patients also have IBS.

The researchers followed 50 patients and 50 matched healthy controls recruited at four ME/CFS clinical sites. They tested for bacterial species in fecal samples, and for immune molecules in blood samples.

They report:

  • Levels of distinct intestinal bacterial species–Faecalibacterium, Roseburia, Dorea, Coprococcus, Clostridium, Ruminococcus, Coprobacillus–were strongly associated with ME/CFS; their combined relative abundance appeared to be predictive of diagnosis
  • Increased abundance of unclassified Alistipes and decreased Faecalibacterium were the top biomarkers of ME/CFS with IBS; while increased unclassified
  • Bacteroides abundance and decreased Bacteroides vulgatus were the top biomarkers of ME/CFS without IBS
  • An analysis of bacterial metabolic pathways associated with disturbances in gut bacteria revealed distinct differences between ME/CFS and ME/CFS subgroups relative to healthy controls
  • In ME/CFS subgroups, symptom severity measures, including pain and fatigue, correlated with the abundance of distinct bacterial types and metabolic pathways
  • No changes were observed in immune markers–a finding that may reflect the dearth of participants who had been ill for a short time; earlier research suggests immune changes may only be evident when comparing short and long duration cases

“Individuals with ME/CFS have a distinct mix of gut bacteria and related metabolic disturbances that may influence the severity of their disease,” says co-lead investigator Dorottya Nagy-Szakal, postdoctoral research scientist at CII.

“Our analysis suggests that we may be able to subtype patients with ME/CFS by analyzing their fecal microbiome,” says co-lead investigator Brent L. Williams, assistant professor of Pathology and Cell Biology at CII. “Subtyping may provide clues to understanding differences in manifestations of disease.”

“Much like IBS, ME/CFS may involve a breakdown in the bidirectional communication between the brain and the gut mediated by bacteria, their metabolites, and the molecules they influence,” says senior author W. Ian Lipkin, director of CII and John Snow Professor of Epidemiology at Columbia’s Mailman School. “By identifying the specific bacteria involved, we are one step closer to more accurate diagnosis and targeted therapies.”

Fecal metagenomic profiles in subgroups of patients with myalgic encephalomyelitis/ chronic fatigue syndrome by Dorottya Nagy-Szakal, Brent L. Williams, Nischay Mishra, Xiaoyu Che, Bohyun Lee, Lucinda Bateman, Nancy G. Klimas, Anthony L. Komaroff, Susan Levine, Jose G. Montoya, Daniel L. Peterson, Devi Ramanan, Komal Jain, Meredith L. Eddy, Mady Hornig and W. Ian Lipkin in Microbiome 2017 5:44 [Published: 26 April 2017]

Microbe discovery project, 26 April 2017: Ian Lipkin’s CII team shows gut bacteria in ME/CFS may influence disease severity

Simmaron Research, by Cort Johnson, 28 April 2017: Columbia & Simmaron Gut Study Uncovers Another Chronic Fatigue Syndrome (ME/CFS) Subset

The Times article by Tim Whipple, 26 April 2017: Gut bacteria linked to chronic fatigue

Virology blog post, by Vincent Racaniello, 27 April 2017: Intestinal dysbiosis in ME/CFS patients

Medical news today article by Tim Newman, 26 April 2017:  Link between chronic fatigue syndrome and gut bacteria explored

Vocativ article, by Ed Cara, 26 April 2017: Scientists Step Closer To Understanding Mysterious Fatigue Syndrome

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The Stanford Paradox: elevated energy production found in ME/CFS

Posted on 04/26/2017 by wames

Health rising blog post, by Cort Johnson, 18 April 2017: The Stanford Paradox: Elevated Energy Production Found in Chronic Fatigue Syndrome (ME/CFS)  

Producing energy is a big problem in Chronic Fatigue Syndrome (ME/CFS). In fact it’s probably the problem in ME/CFS, which is why the findings of mitochondrial dysfunction and lowered ATP production have made sense. When the metabolomics studies suggested that chronic fatigue syndrome (ME/CFS) was a hypometabolic state, the field seemed set: energy production (ATP) was low and the mitochondrial activity probably was too. Fatiguing disease and low ATP production: it seemed to make so much sense.

Then came the study with the eye-catching title: “Elevated Energy Production in Chronic Fatigue Syndrome Patients.” It suggested that far from being low, cellular energy production was actually abnormally high in ME/CFS patients. Even for a field that’s had more than its share of inconsistent findings, that was a real lu-lu.

The results, though, could not be ignored. They didn’t come from a small research group but from the Xinnan Wang Lab at Stanford.  Last year the lab – which is devoted entirely to studying the mitochondria – made headlines with its potentially seminal finding in Parkinson’s disease.  It uncovered a defect that prevented Parkinson’s patients from removing their mitochondria as their mitochondria start to wear out. That defect left those mitochondria pumping toxins into the brain.  Because the defect was present in different types of Parkinson’s patients, it suggested that a “mitochondriopathy” might lie at the core of the disease.

Plus the patient samples in the Wang ME/CFS study came from some of our best ME/CFS experts. Plus it was funded by an ME/CFS group – the Chronic Fatigue Initiative – that hires only the best researchers. There was no looking past this result.

Read Cort Johnson’s exploration of the study

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BBC Woman’s hour interview with woman with ME

Posted on 04/26/2017 by wames

BBC iplayer, 24 April 2017: BBC Radio 4 Woman’s hour programme: Interview with a female actor from Glasgow who has had ME since she was 9.

She discusses how she became ill and gives a very good overview of how it has affected her over the years. She mentions how it affects her ability to work and her worries about being able to self care and live independently.

Available to listen to or download   29:45 – 33:15 mins  (3 and a half minutes long)

 

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A content analysis of CFS & ME in the US news from 1987 to 2013

Posted on 04/25/2017 by wames

Research abstract:

A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013, by Zachary A Siegel, Abigail Brown, Andrew Devendorf,  Johanna Collier, Leonard Jason in Chronic Illness [Preprint April 2017]

Objectives:
The aim of this study was to analyze the content of American newspaper articles (n=214) from 1987 to 2013, in order to understand how the public digests information related to Chronic Fatigue syndrome, a controversial and misunderstood illness.

Methods:
A novel codebook derived from the scientific literature was applied to 214 newspaper articles collected from Lexis Nexis Academic(r). These articles were coded quantitatively and frequency tables were created to delineate the variables as they appeared in the articles.

Results:
The etiology was portrayed as organic in 64.5% (n=138) of the articles, and there was no mention of case definitions or diagnostic criteria in 56.1% (n=120) of the articles. The most common comorbidity was depression, appearing in 22.9% (n=49) of the articles. In 55.6% (n=119) of the articles, there was no mention of prevalence rates. In 50.9% (n=109) of the articles, there was no mention of any form of treatment for the illness. A total of 19.4% (n=42) of the headlines mislabeled the name of the illness.

Discussion:
Based on descriptive statistics of all 214 coded articles, media communicated mixed messages for salient variables such as the name of the illness, its etiology and treatment.

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CFS and the immune system

Posted on 04/24/2017 by wames

Review summary:

Chronic fatigue syndrome and the immune system: Where are we now?, by Fane Kojo Fosu Mensaha, Amolak Singh Bansal, Brian Ford, Geraldine Cambridge in Neurophysiologie Clinique/Clinical Neurophysiology [Available online 12 April 2017]

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterised by multiple symptoms including fatigue, headaches and cognitive impairment, which have a significantly adverse effect on the normal functioning and well-being of the individual. These symptoms are often triggered or worsened following physical or mental exertion.

ME/CFS has long been thought of as having a significant immunological component, but reports describing changes in immune function are often inconsistent between study groups. Although the wide range of physical, neurocognitive and autonomic symptoms reported have seriously hampered attempts to understand pathophysiological pathways, investment in biomedical research in ME/CFS is finally increasing with a number of novel and promising investigations being published.

The onset of ME/CFS may often be linked to (viral) infections which would be consistent with a variety of alterations in natural killer (NK) cell function as described by a number of different groups.

Consistency in cytokine data has been lacking so far, although recently more sophisticated approaches have led to more robust data from large patient cohorts. New hope has also been given to sufferers with the possibility that therapies that deplete B cells can result in clinical improvement.

To understand the pathogenic mechanism in this complex condition, it is important to consider repeated analysis in different cohorts. In this review, we will discuss the potential of different components of the immune system to be involved in the pathogenesis of ME/CFS.

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Help secure the World Health Organisation’s classification of ME & CFS

Posted on 04/21/2017 by wames

ME action blog post: Help secure the World Health Organisation’s classification of ME & CFS

Important call to action! We need all hands on deck for a simple, but important task.

The World Health Organisation (WHO) is reviewing its International Classification of Disease (ICD) for its upcoming 11th edition (ICD-11). There has been enormous concern about what was going to happen to how ME & CFS are classified in the new edition.

Suzy Chapman & Mary Dimmock have been working tirelessly on this issue, and they need our help. They need people to go into the ICD system and agree with their proposal and/or make a comment. Read their full proposal here.

Chapman and Dimmock recommend that the disease be listed as Myalgic Encephalomyelitis and Chronic Fatigue Syndrome for the “concept titles” for the disease. (The disease was previously indexed as “Benign Myalgic Encephalomyelitis” and “Postviral Fatigue Syndrome.” The recommendation is to change those titles since the disease is not benign, and not all cases are postviral. Postviral Fatigue Syndrome will be listed as a synonym of the disease.)

It’s also being recommended that ME and CFS  be retained under Chapter 08: “Diseases of the nervous system” and “Other disorders of the nervous system.”

The ICD-10 first came into use in 1994, with countries gradually adopting it over time. (The U.S. adopted the ICD-10 in 2015). It is only now being updated to the ICD-11, which means that the classifications for ME and CFS in ICD-11 will last a long time. It’s crucial that we take action now!

The deadline for comments on the ICD-11 is not yet clear but the sooner we submit our comments, the better to ensure that ME and CFS are properly classified in the new edition.

Follow these steps to show support for the classification:
1. Register at this link.

(Note: you may find that you can’t complete the registration form without naming an organisation to which you belong. You could consider registering as a #MEAction member or as member of a Facebook group.)

If you are having problems negotiating the registration page, check out short WHO tutorial.

2. Click on this link to see the proposal.

3. Scroll down through the proposal to the bottom where you’ll see: “Agree” and “Disagree” buttons.

Click “Agree.”

4. There is also an “Add comment” button, where you can add a comment. You’ll see comments from other people there. While it is not essential to add a comment, it is a good idea as some of the “Agrees” have disappeared from the system (there may be a bug in the form; no comments have disappeared). Adding a simple comment like, “I agree with this proposal,” will ensure that your support remains visible.

If you would like to make a more elaborate comment, the following are key points from the proposal, which you could use:

  • These three terms should continue to be classified in the neurological chapter, as was done in ICD-10, until such time that research provides the evidence to support a more appropriate classification.
  • The term “postviral fatigue syndrome” should be removed as the lead term because not all cases are postviral. Instead, the terms “chronic fatigue syndrome” and “myalgic encephalomyelitis” should be elevated to concept titles, each with their own separate code. This is necessary for correct disease tracking and for accurate population statistics.
  • The ICD-10 term “benign myalgic encephalomyelitis” should be modified to “myalgic encephalomyelitis” as the disease is not benign.
    Reciprocal exclusions should be added between these three terms and the word “fatigue” (as was done in ICD-10) and also between these terms and bodily distress disorder.
  • These terms should not be classified and/or dual parented in either the symptoms chapter or the mental health chapter in the ICD 11 Handbook.

5. Send this information to your local ME/CFS organisation, and ask them to support the proposal. – WAMES will be supporting.

Mary & Suzy also suggest:

  • If you are commenting on behalf of an organisation, please indicate the organisation’s name in your comment.
  • You won’t be able to edit, add additional content, or delete your comment once it has been submitted ‒ so you may want to prepare a draft, and copy and paste it into the field.
  • You can include references to papers, reports, etc. in support of your comments but you won’t be able to upload files.
  • At the moment, it is not clear by what date comments on proposals will need to be in by in order to be taken into consideration for the version of ICD-11 that is scheduled for release in 2018. The sooner, the better.

To receive updates on Suzy & Mary’s proposal, follow Suzy’s Twitter account: @dxrevisionwatch

For queries, email Mary or Suzy at:
Mary Dimmock: medimmock@gmail.com
Suzy Chapman: dxrevisionwatch@page1.myzen.co.uk

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Migraine summit & CFS & FM

Posted on 04/13/2017 by wames

Health rising forum post, by Cort Johnson, 11 April 2017: Migraine Summit Poses Opportunities For Fibromyalgia and Chronic Fatigue Syndrome Patients

A Different Kind of Summit

Online Health Summits have become something of a big deal over the past couple of years. They provide patients free access (if they watch them each day) to ideas and therapies they might not have. They’ve also become somewhat predictable in their lineups of alternative health MD’s and practitioners.
The “Worldwide Migraine Summit” from April 23rd-29th is different. It’s got some alternative health practitioners but it’s also packed with doctors from prestigious institutions such as the Mayo Clinic, the Cleveland Clinic, UCLA and the Harvard Medical School. Eleven neurologists and four directors of University Departments are speaking.

With support from major non-profit groups such as The American Migraine Foundation, the National Headache Foundation and The Migraine Trust, this Summit is different indeed.

The lead talk on the “Top Ten Myths of Migraine” by a Professor of Neurology will almost explode the myth that migraine is rare. The 2013 Global Burden of Disease Study found that migraine was the sixth highest cause worldwide of years lost due to disability (YLD). Over 36 million Americans are effected. About 15% of women and 6% of men are believed to suffer from migraine and that number goes up considerably for fibromyalgia and chronic fatigue syndrome.

The Fibromyalgia, Chronic Fatigue Syndrome, Migraine Connection

A large Spanish study found that over 50% of fibromyalgia (FM) patients met the criteria for migraine – and many of them likely had no idea that they had this affliction. (More FM patients met the criteria for migraine than for chronic fatigue syndrome.) The penalty for having fibromyalgia and migraine was a harsh one as well which included significantly increased risks of also having chronic fatigue syndrome (ME/CFS) and depression as well as hypertension (p<.004), asthma (p<.01), irritable bowel syndrome (p<.02), and PTSD (p<.005).

Dr. Baraniuk, a chronic fatigue syndrome (ME/CFS), Gulf War Illness and FM researcher believes similar brain issues may underlie all these diseases. Baraniuk has even used migraine medications successfully in ME/CFS patients who don’t have migraines.

Other doctors have found treatments used for migraine helpful in ME/CFS/FM as well. Dr. Katherine Downing-Orr and Dr Goldstein before her, uses nimodipine, a calcium channel blocker often used for migraine relief, in her treatment protocol for ME/CFS. Dr. Teitelbaum uses magnesium, a popular supplement in FM and ME/CFS, to help his patients with migraines.

Read more about the summit

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An Acceptance and Commitment Therapy (ACT) intervention for CFS

Posted on 04/12/2017 by wames

Research abstract:

An Acceptance and Commitment Therapy (ACT) intervention for Chronic Fatigue Syndrome (CFS): A case series approach, by Lauren Roche, David L Dawson, Nima G Moghaddam, Anne Abey in Journal of Contextual Behavioral Science [Published online April 8, 2017]

Objective:
Acceptance and Commitment Therapy (ACT) has been shown to improve the  psychological well-being of individuals suffering from a range of chronic health conditions, and aims to increase psychological flexibility in order to foster greater engagement in personally meaningful behavior. We aimed to assess whether the approach (delivered via guided bibliotherapy) may have utility for individuals experiencing the debilitating effects of Chronic Fatigue Syndrome (CFS).

Methods:
We used a mixed-methods multiple single-case design to explore the effects of a six week self-help ACT intervention for six participants diagnosed with CFS.

Results:
Significant increases in ratings of valued living were replicated and maintained in four participants, with qualitative data further highlighting the importance of the values component of the intervention.

Acceptance scores improved in four participants but were not maintained at follow-up, whereas improvements in psychological flexibility were observed and maintained for three participants. All participants wearing an activity monitor evinced increased physical activity post intervention, which was maintained at follow up in half of the participants.

Conclusion:
The ACT self-help intervention appeared to benefit most participants on at least one assessed metric, particularly in terms of the promotion and pursuit of individual values, and increased physical activity. However, the results suggest these benefits may be difficult to maintain longer term without further input.

Highlights:

  • Acceptance and Commitment Therapy can improve wellbeing in chronic health conditions
  • Chronic Fatigue Syndrome is a debilitating and challenging chronic syndrome
  • We examine guided ACT self-help in a case-series of individuals with CFS
  • ACT was linked with increased physical activity and valued behaviour
  • Across cases, evidence for effects on psychological flexibility was mixed
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Central nervous system findings in CFS

Posted on 04/12/2017 by wames

Review abstract:

CNS findings in chronic fatigue syndrome and a neuropathological case report
Kimberly Ferrero, Mitchell Silver, Alan Cocchetto, Eliezer Masliah, Dianne Langford in Journal of Investigative Medicine Vol 65 Issue 4 [published 6 April 2017]

Chronic fatigue syndrome (CFS) is characterized as a persistent, debilitating complex disorder of unknown etiology, whereby patients suffer from extreme fatigue, which often presents with symptoms that include chronic pain, depression, weakness, mood disturbances, and neuropsychological impairment.

In this mini review and case report, we address central nervous system (CNS) involvement of CFS and present neuropathological autopsy findings from a patient who died with a prior diagnosis of CFS.

Among the most remarkable pathological features of the case are focal areas of white matter loss, neurite beading, and neuritic pathology of axons in the white matter with axonal spheroids. Atypical neurons displaying aberrant sprouting processes in response to injury are observed throughout cortical gray and white matter.

Abundant amyloid deposits identical to AD plaques with accompanying intracellular granular structures are observed as well. Neurofibrillary tangles are also present in the white matter of the frontal cortex, thalamus and basal ganglia.

Taken together, these neuropathological findings warrant further studies into CNS disease associated with CFS.

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Dr Shepherd says ‘It’s time for an independent review of the PACE Trial methods & results’

Posted on 04/11/2017 by wames

Article abstract:

PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the PACE Trial methods and results, by Charles Bernard Shepherd in Journal of Health Psychology, 10 April 2017

The PACE trial set out to discover whether cognitive behaviour therapy and graded exercise therapy are safe and effective forms of treatment for myalgic encephalomyelitis/ chronic fatigue syndrome.

It concluded that these interventions could even result in recovery. However, patient evidence has repeatedly found that cognitive behaviour therapy is ineffective and graded exercise therapy can make the condition worse.

The PACE trial methodology has been heavily criticised by clinicians, academics and patients. A re-analysis of the data has cast serious doubts on the recovery rates being claimed. The trust of patients has been lost. The medical profession must start listening to people with myalgic encephalomyelitis/chronic fatigue syndrome if trust is going to be restored.

Excerpt:

First, on behalf of all the journals that have so far published 16 papers from the trial, The Lancet must now set up an independent re-analysis of the PACE trial data, along with appropriate sensitivity analysis. This re-analysis should be carried out by well respected independent reviewers with expertise in statistics and study design. If any results are found to be significantly inaccurate or unreliable, the possibility of a retraction will have to be considered.

Second, if a drug treatment was found to be making a significant proportion of people worse, as is the case with patient evidence relating to the use of GET, the treatment would be withdrawn and would not form part of a NICE recommendation. As there is now both consistent and extensive patient evidence relating to the harmful effects of GET, the NICE guideline recommendation on GET must be reviewed as a matter of urgency. The generic prescribing of progressive and inflexible exercise programmes is not an acceptable form of treatment for people with ME/CFS.

Third, the enormous amount of public money spent by the Medical Research Council and Department of Work and Pensions on funding the PACE trial, along with legal costs met by Queen Mary University of London in appealing against the Freedom of Information requests, merits a formal inquiry, possibly at a parliamentary level.

Finally, there is a desperate need for clinical trials of activity management that examine the heterogeneity of ME/CFS, the fact that underlying disease processes involve both central and peripheral fatigue, and the consistent evidence from patients that inflexible or progressive exercise programmes aggravate symptoms in the majority of patients who come under the ME/CFS umbrella.

Read the full article

Link to other articles on the PACE trial in the Journal of Health Psychology:

PACE team response shows a disregard for the principles of science (Professor Jonathan Edwards)

The problem of bias in behavioural intervention studies: Lessons from the PACE trial (Carolyn Wilshire)

Do graded activity therapies cause harm in chronic fatigue syndrome? (Tom Kindlon)

Investigator bias and the PACE trial (Steven Lubet)

How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies? (Dr Luis Nacul et al from the UK ME/CFS Biobank)

The PACE trial missteps on pacing and patient selection (Professor Leonard A Jason)

Response to the editorial by Dr Geraghty (Professor Peter D White, Professor Trudie Chalder, Professor Michael Sharpe et al)

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