Scientists discover biological evidence of 2 subgroups in ME/CFS

Posted on 04/05/2017 by wames

Medical news today blog post, by Ana Sandoiu, 4 April 2017: Biological basis of ‘atypical’ chronic fatigue syndrome revealed

Extract:

…CFS is difficult to identify as there is no test for it, and because it shares some of its symptoms with other illnesses. However, new research investigates the biological basis for the illness and identifies two subgroups of CFS that go on to develop differently: the so-called classical CFS and an “atypical” variant.

The study was carried out by researchers at the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health in New York, and it was led by Dr. Mady Hornig, director of translational research at CII and associate professor of epidemiology at the university. The results were published in the journal Translational Psychiatry.

Those with atypical CFS found to have lower levels of immune molecules

Hornig and team performed immunoassays to measure 51 immune biomarkers in the cerebrospinal fluid of 32 people with classical CFS, and another 27 with atypical CFS.

The tests showed lower levels of immune molecules in those with atypical CFS than in those with the classical variant. The analyses revealed drastically lower levels of interleukin 7 (a protein that plays a key role in the adaptive immune response to infections), interleukin 17A, and chemokine ligand 9 (molecules with a key role in the adaptive immunity to neurological illnesses).

Additionally, these biological features were accompanied by different trajectories of disease history and comorbidities. Those with atypical CFS tended to have a history of viral encephalitis and tended to fall ill after traveling abroad or receiving a blood transfusion.

Furthermore, people with atypical CFS went on to develop simultaneous conditions such as seizure disorders, several types of cancers, or demyelinating disorders – that is, multiple sclerosis-like diseases that damage myelin, the protective sheath around the nerve cells in our brains and spinal cords.

“We now have biological evidence that the triggers for ME/CFS may involve distinct pathways to disease, or, in some cases, predispose individuals to the later development of serious comorbidities.

Importantly, our results suggest that these early biomarker profiles may be detectable soon after diagnosis of ME/CFS, laying a foundation for better understanding of and treatments for this complex and poorly understood illness.”    Dr. Mady Hornig

Read the full article with comment by Dr Ian Lipkin

Immune network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome with atypical and classical presentations, by Hornig, C G Gottschalk, M L Eddy, X Che, J E Ukaigwe, D L Peterson and W I Lipkin in Translational Psychiatry: (2017) 7 [Published online 4 April 2017]

Columbia University blog post, 4 April 2017: Scientists Discover Biological Evidence of “Atypical” Chronic Fatigue Syndrome   Defining subgroups may help clinicians identify and treat the complex, debilitating disease also known as myalgic encephalomyelitis or ME/CFS

 

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US top science journal asserts shift in attitude towards ME/CFS has occurred

Posted on 04/03/2017 by wames

Simmaron Research blog post, by Cort Johnson, 31 March 2017: The Shift: Top Science Journal Asserts Shift in Attitude Towards ME/CFS Has Occurred,

“Chronic Fatigue Syndrome is a biological disease” Dr. Ian Lipkin’s Center for Infection and Immunity at Columbia University

From NIH Director Francis Collins’ high profile blog “Moving Toward Answers in ME/CFS“, to the New York Times Opinion piece “Getting It Wrong on Chronic Fatigue Syndrome” exposing the failures of the PACE trial, to the coverage of the Australians’ search for a biomarker, the chronic fatigue syndrome (ME/CFS) community has been treated to some excellent press lately.

Influential journal suggests a shift is occurring in how researchers are viewing ME/CFS
Now comes a piece “Biological underpinnings of chronic fatigue syndrome begin to emerge” from the news section of Nature, one of the world’s most read and most prestigious scientific journals. The article, written by Amy Maxmen, proclaims that a “shift” from viewing ME/CFS as psychosomatic to viewing it as a real disorder has occurred.

The article is a far cry from some of sentiments of the “Life After XMRV” piece Nature did in 2011 in which Simon Wessely asserted that the patients’ reactions to that finding would lead another generation of researchers to avoid ME/CFS research.  (He rather memorably suggested that researchers would rather “work on images of Mohammed” than study it.) Even advocates for the disease, though, worried that the controversy would turn off researchers.  Others, however, felt that the XMRV finding would galvanize researchers to use new technologies to understand ME/CFS.

They were right. Wessely, it appears, was wrong.

World-Class Researchers Beginning to Take ME/CFS On
The Nature article makes it clear that a major cause for the shift occurring is the presence, for the first time ever, of world-class researchers willing to take ME/CFS on.

Dr. Ian Lipkin, an immunologist with an unmatched resume, has not only lent his name and prestige to this disease, but his Columbia team’s published findings  – two of which have outlined dramatic changes in immune functioning in ME/CFS –  have been at the center of this shift. The Columbia team’s findings have been built on collaborations with expert clinicians, including Dr. Daniel Peterson and the Simmaron Research Foundation he advises. (Check out the slideshow that dominates the website for Lipkin’s Center for Infection and Immunity (CII): one of the slides simply says, “Chronic Fatigue Syndrome is a biological disease”.)

Ron Davis, with his many awards and the stunning story of his son’s illness, is also reaching deep into the scientific world to find answers. The stunning picture of Davis holding the printed circuit he’s using to decipher ME/CFS could be a metaphor for the search for the answer to ME/CFS itself.  The answer is there in that maze somewhere, and it’s going to be technology – probably new technology – that uncovers it.

These two men, with their willingness to publicly take bold stands for this disease, have been at the forefront of the “shift” that appears to be occurring. Both men have had the ear of the NIH Director, Francis Collin.  Their credibility has gone far in helping the National Institutes of Health, the largest funder of biomedical research in the country, take a reinvigorated approach to ME/CFS.

Next, Nature cites the conclusion from the IOM report’s “expert panel” that  chronic fatigue syndrome is an under-studied physiological illness. Then comes mention of the intramural study led by Avindra Nath, the widely published and respected clinical director for the National Institute of Neurological Disorders (NINDS). An infectious neurologist, Dr. Nath is conducting the first intramural study in ME/CFS in decades at the National Institutes of Health Clinical Center. Dr. Lipkin and Dr. Peterson are advisers on this intramural study.

Others could have been mentioned: Mark Davis of Stanford, Derya Unutmaz of the Jackson Laboratory, Lasker Award winner Michael Houghton of the University of Alberta, Patrick McGowan of the University of Toronto and others new to the field.  As the names line up, you do get the idea that, as Dr. Nath told Nature, “Researchers are thinking deeply about how to build the field.”

Building the field, of course, is what the NIH’s recent decision to fund three ME/CFS research centers is all about. Yes, much more is needed, but this article, showing up in a highly cited journal, suggests that the tide may be slowing turning where it needs to turn the most – in the research community.

Ian Lipkin and the Center for Infection and Immunity Step Forward

Ian Lipkin is featured twice in the article, first stating:

“We now have a great deal of evidence to support that this is not only real, but a complex set of disorders. We are gathering clues that will lead to controlled clinical trials.”

Three studies from Lipkin and Hornig at Columbia are expected to be published shortly with one to be published next week. Don’t be surprised if, based on Lipkin’s comments, the CII lays the groundwork for something the chronic fatigue syndrome (ME/CFS) community has been waiting for a long time: evidence of biologically determined subsets, or in Lipkin’s words, direct evidence that ME/CFS is made up of a “complex set of disorders”.

The Simmaron Research Institute / Center For Infection and Immunity Collaboration

In its efforts to scientifically redefine ME/CFS, the Simmaron Research Foundation regularly partners with Dr. Lipkin’s Center for Infection and Immunity. Recent efforts included the spinal fluid study which showed dramatic alterations in immune functioning in the brain, the immune study which differentiated short from long duration ME/CFS patients, and the gut study about to be published. Simmaron is currently collaborating with the CII on additional phases of spinal fluid research and more.

Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)
Simmaron’s Spinal Fluid Study Finds Dramatic Differences in Chronic Fatigue Syndrome
Major Study Suggests Early Immune Activation May Drive Chronic Fatigue Syndrome

Stay tuned for a Simmaron/CII study that will help to reshape our understanding of what ME/CFS is and how it should be treated.

The Gut and ME/CFS

The gut with its immense effect on the immune system is proving to be a fertile area of research on ME/CFS (see below). Perhaps no other team has pushed the ME/CFS gut connection more effectively recently than Ian Lipkin and Mady Hornig at the CII.

The Nature piece tantalized us a bit with news from Ian Lipkin that one of those studies showing an unusual pattern of gut flora in people with ME/CFS and IBS will be published soon.

A quick look at what studies have told us (see below) about the gut and chronic fatigue syndrome (ME/CFS) suggests that reduced gut floral diversity, possibly characterized by increased numbers of inflammatory bacteria may be common in ME/CFS.

Importantly, every study that has looked for leaky gut – which involves the translocation of gut bacteria into the blood – where it could spark an immune response causing fatigue, pain and other symptoms – has found it.  Most intriguingly, the research suggesting that exercise may negatively affect ME/CFS patients’ gut flora and increase their leaky gut issues could help explain post-exertional malaise.

The Gut and ME/CFS – Recent Findings

  • Exercise in ME/CFS produces changes in gut flora, leaky gut and Inflammation  – Shukla’s 2015 study suggests that exercise not only changes the composition of the gut flora in people with ME/CFS but results in increased levels of gut bacteria leaking into the blood (possibly causing inflammation and post-exertional malaise.) The fun didn’t stop there. The ME/CFS patients also had more trouble clearing the gut bacteria from their blood than the healthy controls.
  • People with ME/CFS have reduced gut flora diversity and leaky gut – Gilotreaux’s 2016 study suggests more pro-inflammatory and fewer anti-inflammatory gut species are present in ME/CFS, and provides more evidence of bacteria sneaking through the gut lining and ending up in the blood.
  • Gut bacteria/viruses are infectious triggers in ME/CFS – Navaneetharaja’s 2016 review paper suggests that gut bacteria and/or viruses have been overlooked in the search for an infectious trigger in ME/CFS.
  • ME/CFS is associated with reduced gut microbiome diversity and increased gut viral activity – Gilotreaux’s 2016 case report of twins found reduced VO2 max, decreased gut bacterial diversity and increased gut viral activity in the sick ME/CFS twin.
  • Antibiotics can improve gut flora and sleep in some ME/CFS patients – Jackson’s 2015 Australian study suggests that erythromycin improved the gut flora and sleep in about a third of ME/CFS patients but not in the rest.
  • Altered gut flora diversity – Fremont’s 2013 study shows increased abundance of the same bacterial family (Firmicuties) in ME/CFS as found in Shukla’s 2015 study.
  • Leaky gut is associated with an autoimmune process – Maes 2013 study suggests that increased bacterial translocation (leaky gut) is associated with high levels of antibodies targeting serotonin. Patients with these antibodies had evidence of increased inflammation.
  • Leaky gut is associated with inflammation and symptom severity – Maes 2012 study suggests ME/CFS patients are mounting a very strong immune response to intestinal bacteria found in the blood that is leading to increased inflammation.
  • IBS/leaky gut subset is present in ME/CFS – Maes 2012 study shows one subset of ME/CFS patients (60%) has leaky gut and IBS while another subset does not.
  • Treating leaky gut in ME/CFS can reduce symptoms – Maes 2008 study shows that treating leaky gut with natural anti-inflammatory and anti-oxidative substances (NAIOSs), such as glutamine, N-acetyl cysteine and zinc in conjunction with a leaky gut diet can significantly improve symptoms in ME/CFS
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New book: Science, Politics, …….and ME: a health scandal in our generation

Posted on 03/31/2017 by wames

CreateSpace.com book publication announcement, 5 March 2017: Science, Politics, …and ME A health scandal in our generation, by Dr Ian Gibson & Elaine Sherriffs

Few diseases can have been so maligned by false information, so manipulated by an insidious establishment-controlled ideology, or so poorly dealt with by those holding the purse-strings for research into the disease, than Myalgic Encephalomyelitis (ME).

This book examines a scandal in our generation – a scandal still being played out by corrupt, apathetic, inept or ignorant attitudes in governments and Medical Research Councils and health services.

One of the authors (Dr Ian Gibson) in his ‘ Retirement’ has written this book with a political friend (Elaine Sherriffs). Ian Gibson has a passing interest in the current political scene across the world and regularly speaks on these issues. When it comes to universal health, he has pointed out on many occasions that governments often ignore scientific evidence.

ME, as described in the book, is a major problem where evidence is relegated to psychiatric explanations. It is a desperate need for scientists as far as health issues are concerned to look for biomedical evidence and ME is a major example.

This book describes the political manoeuvring which features just like those in the TV programme The House of Cards in the USA & the UK which described the games that are played in both parliaments. He has previously addressed these problems in an early book in 1981 – called  ‘Class, Health & Profit’.

Ian and Elaine have penetrated the murky world of politics which features in the world of ME. It is long past the time to treat this as a serious illness and the need for serious biomedical research. This will only come about when politicians and the media stop trivialising the illness.

Science, Politics …… and ME is a book which will serve as a reference for the dark times, when patients were ill-served by the clash of interests between truths and untruths. It is also a book which comes at a time where a brighter future may be in the making for people with ME and their families.

Publication Date: March 05 2017
ISBN/EAN13: 1543183786/9781543183788
Paperback

£7.99 from Amazon

 

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Adults’ experiences of the illness trajectory in post-infectious fatigue syndrome in Norway

Posted on 03/31/2017 by wames

Research abstract:

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory, by Eva Stormorken, Leonard A. Jason and  Marit Kirkevold in BMC Family Practice 2017 18:49  [PNorwayublished: 27 March 2017]

Background:
Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study’s purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities.

Methods:
A qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26–59). The interviews were fully transcribed and subjected to a qualitative content analysis.

Results:
All participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and a few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases.

Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities.

Conclusions:
The needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis.

Comment from ME Research UK: Experiences of post-infectious fatigue syndrome

 

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UK MEGA project update on funding applications & patient advisory group

Posted on 03/30/2017 by wames

MEGA research blog post, by Sonya Chowdhury, 29 March 2017: Our latest funding application and Patient Advisory Group update

An update from the Scientific Team and Patient Advisory Group.

First the bad news: unfortunately our preliminary application to Wellcome, submitted at the start of the year, was turned down. No feedback was given so we don’t know why it was rejected.

The good news is that, in the last couple of weeks, the Scientific Team and the Patient Advisory Group have prepared a new outline application for further funding. With a short deadline it was tough going at times, but having had substantial input, the Patient Advisory Group are very pleased with the submission.

A very productive meeting between Prof Esther Crawley, Prof Julia Newton and the Patient Advisory Group was held early last week with some important points agreed:

  • Both the Scientific Team and the Patient Advisory Group agree that it is absolutely essential that we collect data from those most severely affected by M.E., and those affected long term. This will require home visits which are very expensive, and the financial limit of the current application will not cover this. However, it was confirmed at the meeting that we will submit an application to this current funding call with a full commitment that further applications will be made to include home visits. By establishing the MEGA bioresource and proving to funders that we can collect data from patients in clinic, the chances of us successfully accessing further funding are hugely increased.
  • Post-exertional malaise will be a prerequisite for inclusion in the bioresource. If successfully funded, a detailed definition of post-exertional malaise will be determined primarily by the Patient Advisory Group in conjunction with the ME/CFS specialists on the Scientific Team.
  • Those whose samples are collected for the bioresource will have their diagnoses and severity of illness confirmed and recorded at point of collection. Several case definitions will be used to categorise patients and it will be clear which case definition any given patient fits into. When analysing results of tests undertaken on samples from the bioresource, the Scientific Team will be clear which subset of patients the results specifically relate to (we will address this in more detail in a forthcoming blog post).

We have updated our Q&A page to highlight the points above.

Patient Advisory Group update

Three Patient Advisory Group members recently decided to leave the group. Their much valued contributions will be missed and their reasons for leaving have been taken on board.

Since their departure, valuable progress has been made and we are happy to report that, despite the initial rushed formation of the Patient Advisory Group and the pressure caused by tight application deadlines, things have really picked up and are beginning to fly. Enthusiasm among Patient Advisory Group members is high, the Scientific Team remains focused, and we all wait with fingers crossed for a positive outcome to this preliminary funding application.

As Prof Newton says, “MEGA represents the opportunity to develop the largest ME bioresource in the world. This will give researchers the material to address some of the big questions that are currently unanswered in ME, to not only help UK patients but the global patient community.”

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Patterns of control beliefs in CFS

Posted on 03/29/2017 by wames

Research abstract:

Patterns of control beliefs in chronic fatigue syndrome: results of a population-based survey, by Johanna M. Doerr, Daniela S. Jopp, Michael Chajewski, Urs M. Nater in BMC Psychology (open access), 6 March 2017

BACKGROUND:   Chronic fatigue syndrome (CFS) represents a unique clinical challenge for patients and health care providers due to unclear etiology and lack of specific treatment. Characteristic patterns of behavior and cognitions might be related to how CFS patients respond to management strategies.

METHODS:   This study investigates control beliefs in a population-based sample of 113 CFS patients, 264 individuals with insufficient symptoms or fatigue for CFS diagnosis (ISF), and 124 well individuals.

RESULTS:   Controlling for personality and coping, individuals with low confidence in their problem-solving capacity were almost 8 times more likely to be classified as ISF and 5 times more likely to be classified as CFS compared to being classified as well. However there was a wide distribution within groups and individuals with “low confidence” scores were found in 31.7% of Well individuals. Individuals with low levels of anxiety and who were more outgoing were less likely to be classified as ISF or CFS.

CONCLUSIONS:   These findings suggest that fostering control beliefs could be an important focus for developing behavioral management strategies in CFS and other chronic conditions.

 

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Expectations of recovery in severe ME could impose unreasonable, unrealistic, even fatal demands

Posted on 03/29/2017 by wames

Stonebird blog post, Mar 2017: 25% Group and Stonebird Response to BACME (British Association for ME/CFS), article on care provision for severe ME

Response to BACME Working Group on Severe CFS/ME Shared Clinical Practice Document Version 1

When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine. Harm, even death for some, may follow poor treatment, care and ignorance. The frailty of someone with Severe/Very Severe ME cannot be exaggerated nor adequately described. You need to take the greatest of care.

The problem with this BACME document is its underlying psychosocial values and attitudes. If you expect a person to get better, that will be your intention, that will be your goal, that is going to influence all your thoughts and actions in your caring role, especially if you set goals or limit care over time.

The care provided by someone with a biomedical understanding of Severe ME is going to be fundamentally different, however much the starting point of care might appear to be similar in this document, to the person who has a psychosocial approach to, because of the opposing underlying values and attitudes.

The most important aspect of caring for a person with Severe Myalgic Encephalomyelitis (ME) is the ‘how’ of caring; the basic core beliefs the carer has about caring and the person to be cared for. What the carer believes will subtly or overtly impact on how caring is provided and has a huge affect on the relationship, quality of care and health of the person receiving the care.

Great harm can be done by someone who is not fully aware that the person with Severe ME is seriously physically ill and that they are not going to be “made well” by changing their thoughts or increasing their activity in a graded way, as this dangerous document from BACME suggests.

The basic principles behind Severe ME-aware care are :

  1. Never define the person by their behaviour.
  2. Acknowledge the serious and severe physical illness underlying the person’s symptom experience.
  3. Adhere to a strictly defined definition of ME ( the ICC).
  4. Honour the WHO classification of ME as a neurological disease and respond appropriately and equally as in any other recognised neurological disease.
  5. Treat the person with respect on all levels; respect for the way interaction occurs, the physical and the cognitive limitations enforced on the person by their severely disabling multi-system dysfunction.
  6.  Honour what the person says regarding their physical and cognitive needs.
  7. Listen to the person and to only interact at the correct time in the correct way. We call this the MOMENT approach, honouring the severe illness the person has whilst maximising the opportunity to engage safely in order to help, not harm them, when undertaking all care needs. (Crowhurst 2015)
  8. Understand any hypersensitivity issues (chemical, drug, touch, noise, light, movement, motion, food); never ignore, undermine, negate or belittle them, recognising the danger of the ordinary environment as real, not just perceived.
  9. Understand and comprehend that the person with Severe ME is not experiencing the world the same way as a well person and cannot fit into the demands and obligations imposed on them by others, easily or at all. A flexible, knowledgeable, sensitive, compassionate, non-judgmental, person-centred not goal oriented approach at all times is critical. Being aware of the after impact of any interaction is essential; that even something once achieved cannot necessarily be achieved or tolerated again or regularly or increased.
  10. Recognise the irrelevance, unhelpful and dangerous nature of a psychosocial response and interpretation of Severe ME, a physical disease. Psychiatry has no right to first hand intervention in this disease which requires a biomedical response and care pathway .

It is vital to ensure that that you never put any overt or covert pressure, demand or expectation to improve, upon the person with Severe ME, nor any underlying belief that is in opposition to the truth and severity of the disease and very real lack of valid treatment and cure.

In ME when you push yourself you deteriorate, whether immediately or delayed, if you push too hard you may even enter worse illness experience than you have already experienced, beyond which you may not be able to recover from at all or only partly. The depth and level of physical and cognitive deterioration and harm that can follow is literally unimaginable before it occurs. The impact can be permanent or very long term.

There are many good observations and insights into the reality of Severe ME in this document; but its expectations of recovery that could impose unreasonable, unrealistic, even fatal demands, render it extremely dangerous.

Anyone who believes the message that people with Severe ME can do more than they physically can, by thought and activity, even if only over time, no matter how genuinely they believe it or how nice they are or how encouraging they are, can so easily do untold harm because they will exact subtle if not overt pressure, however kindly, upon the person to improve.

A carer following this guide, we fear, is unlikely to be able to separate care from treatment, to comprehend the importance of flowing with the person, just to help them cope, rather than set goals for “recovery” , however seemingly small from the well perspective nor appreciate the long term commitment just to improve quality of life and comfort rather than quality of thought and ability.

There is no place for complacency, mediocrity or carelessness in the life of someone with Severe ME. A carer’s interventions can cause serious harm to the person’s health. As the PACE and FINE Trials have shown, the psychosocial approach that this guide is constructed upon, is bound to fail and not just fail but cause real harm. (Vink 2017).

It must be Viewed within its psychosocial context, this document cannot possibly be recommended for anyone with WHO G93.3 defined Myalgic Encephalomyelitis.

References:

Crowhurst G (2016) The MOMENT Approach

BACME Working Group on Severe CFS/ME Shared Clinical Practice Document Version 1 (2017)

Vink M (2017) Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported. J Neurol Neurobiol 3(1)

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The problem of bias in behavioural intervention studies: lessons from the PACE trial

Posted on 03/29/2017 by wames

Abstract:

The problem of bias in behavioural intervention studies: Lessons from the PACE trial, by Carolyn Wilshire in Journal of Health Psychology [Preprint 23 March 2017]

Geraghty’s recent editorial on the PACE trial for chronic fatigue syndrome has stimulated a lively discussion. Here, I consider whether the published claims are justified by the data. I also discuss wider issues concerning trial procedures, researcher allegiance and participant reporting bias.

Cognitive behavioural therapy and graded exercise therapy had modest, time-limited effects on self-report measures, but little effect on more objective measures such as fitness and employment status.

Given that the trial was non-blinded, and the favoured treatments were promoted to participants as ‘highly effective’, these effects may reflect participant response bias. In non-blinded trials, the issue of reporting biases deserves greater attention in future.

Read the full article

 

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The role of autonomic function in exercise-induced analgesia in ME/CFS

Posted on 03/28/2017 by wames

Research abstract:

The Role of Autonomic Function in Exercise-induced Endogenous Analgesia: A Case-control Study in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Healthy People by Jo Nijs, Lieven Danneels, Luc Lambrecht, Greta Moorkens, Mira Meeus, Lorna Paul, Jessica Van Oosterwijck, Uros Marusic, and Inge De Wandele in Pain Physician 2017; 20:E389-E399

BACKGROUND: Patients with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are unable to activate brain-orchestrated endogenous analgesia (or descending inhibition) in response to exercise. This physiological impairment is currently regarded as one factor explaining post-exertional malaise in these patients. Autonomic dysfunction is also a feature of ME/CFS.

OBJECTIVES: This study aims to examine the role of the autonomic nervous system in exercise-induced analgesia in healthy people and those with ME/CFS, by studying the recovery of autonomic parameters following aerobic exercise and the relation to changes in self-reported pain intensity.

STUDY DESIGN: A controlled experimental study.

SETTING: The study was conducted at the Human Physiology lab of a University.

METHODS: Twenty women with ME/CFS- and 20 healthy, sedentary controls performed a submaximal bicycle exercise test known as the Aerobic Power Index with continuous cardiorespiratory monitoring. Before and after the exercise, measures of autonomic function (i.e., heart rate variability, blood pressure, and respiration rate) were performed continuously for 10 minutes and self-reported pain levels were registered. The relation between autonomous parameters and self-reported pain parameters was examined using correlation analysis.

RESULTS: Some relationships of moderate strength between autonomic and pain measures were found. The change (post-exercise minus pre-exercise score) in pain severity was correlated (r = .580, P = .007) with the change in diastolic blood pressure in the healthy group. In the ME/CFS group, positive correlations between the changes in pain severity and low frequency (r = .552, P = .014), and between the changes in bodily pain and diastolic blood pressure (r = .472, P = .036), were seen. In addition, in ME/CHFS the change in headache severity was inversely correlated (r = -.480, P = .038) with the change in high frequency heart rate variability.

LIMITATIONS: Based on the cross-sectional design of the study, no firm conclusions can be drawn on the causality of the relations.

CONCLUSIONS: Reduced parasympathetic reactivation during recovery from exercise is associated with the dysfunctional exercise-induced analgesia in ME/CFS. Poor recovery of diastolic blood pressure in response to exercise, with blood pressure remaining elevated, is associated with reductions of pain following exercise in ME/CFS, suggesting a role for the arterial baroreceptors in explaining dysfunctional exercise-induced analgesia in ME/CFS patients.

Comment by Dr Charles Shepherd:

One of the most consistent neurological abnormalities to be reported in ME/CFS involves what is called the autonomic nervous system (ANS).

This is a part of the nervous system that has its control centres in the brain. The regulatory centres then send messages, which are not under conscious control, via the sympathetic and parasympathetic nerves, to regulate the heart rate and blood pressure, the bowels and bladder, and blood flow to muscle and other key parts of the body – including the brain.

The ANS can either speed up or slow down activities in the heart, bowels and bladder – so overactivity will speed up the pulse rate and can also cause irritable bowel and irritable bladder type symptoms.

It also appears that the ANS has a role in pain production and post-exertional symptomatology.

This is why the MEA Ramsay Research Fund is keen to fund more research into the role of the ANS – including a large study that researchers in Brussels and Glasgow have been carrying out for us.

The results in this paper relate to a study that examined the role of the ANS in exercise induced-analgesia (more information on this normal physiological response below) in people with ME/CFS, and in healthy controls, following an exercise challenge and in relation to self-reporting of pain severity.

Measurements of ANS activity (i.e. pulse rate, blood pressure, respiratory rate) were carried out before and after exercise along with self reporting of pain levels.

The study concluded that there is dysfunctional exercise-induced analgesia in people with ME/CFS.

This is an important new finding that helps to increase our understanding of why pain occurs in ME/CFS and something that could lead to more effective methods of both prevention and treatment of pain in ME/CFS

Dr Charles Shepherd
Hon Medical Adviser, ME Association
29 March 2017

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