Activin B – a potential biomarker for CFS/ME?

Posted on 03/21/2017 by wames

Research abstract:

Background: Investigations of activin family proteins as serum biomarkers for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). CFS/ME is a disease with complex, wide-ranging symptoms, featuring persistent fatigue of 6 months or longer, particularly post exertion. No definitive biomarkers are available.

Methods: A cross-sectional, observational study of CFS/ME patients fulfilling the 2003 Canadian Consensus Criteria, in parallel with healthy non-fatigued controls, was conducted. Comparisons with a previously defined activin reference population were also performed.

For the total study cohort the age range was 18–65 years with a female: male participant ratio of greater than 3:1. All participants were assessed via a primary care community clinic. Blood samples were collected for pathology testing after physical examination and orthostatic intolerance assessment. Cytokines, activin A, activin B and follistatin were also measured in sera from these samples. All data were compared between the CFS/ME and control cohorts, with the activins and follistatin also compared with previously defined reference intervals.

Results: Serum activin B levels for CFS/ME participants were significantly elevated when compared to the study controls, as well as the established reference interval. Serum activin A and follistatin were within their normal ranges. All routine and special pathology markers were within the normal laboratory reference intervals for the total study cohort, with no significant differences detected between CFS/ME and control groups. Also, no significant differences were detected for IL-2, IL-4, IL-6, IL-10, IL-17A, TNF or IFN-gamma.

Conclusion: Elevated activin B levels together with normal activin A levels identified patients with the diagnostic symptoms of CFS/ME, thus providing a novel serum based test. The activins have multiple physiological roles and capture the diverse array of symptoms experienced by CFS/ME patients.

Activin B is a novel biomarker for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) diagnosis: a cross sectional study, by Brett A. Lidbury, Badia Kita,
Donald P. Lewis, Susan Hayward, Helen Ludlow, Mark P. Hedger and David M  de Kretser in Journal of Translational Medicine 2017 15:60 [Published: 16 March 2017]

Comment:

ME Action blog post, by Sasho Nimmo: Australian scientists publish study showing potential biomarker for ME/CFS

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New York Times: Getting it wrong on CFS

Posted on 03/20/2017 by wames

New York Times article, by Julie Rehmeyer and David Tuller, 18 March 2017: Getting It wrong on Chronic Fatigue Syndrome

What are some of the treatment regimens that sufferers of chronic fatigue syndrome should follow? Many major medical organizations cite two: psychotherapy and a steady increase in exercise. There’s just one problem. The main study that has been cited as proof that patients can recover with those treatments overstated some of its results. In reality, the claim that patients can recover from these treatments is not justified by the data.

That’s the finding of a peer-reviewed preliminary re-analysis of previously unpublished data from the clinical trial, the largest ever for chronic fatigue syndrome. Nicknamed the PACE trial, the core findings of the British study appeared in The Lancet in 2011 and Psychological Medicine in 2013. Patients battled for years to obtain the underlying data, and last spring, a legal tribunal in Britain, the General Regulatory Chamber, directed the release of some of the study’s information.

The impact of the trial on treatment options for the estimated one million chronic fatigue patients in the United States has been profound. The Mayo Clinic, Kaiser Permanente, WebMD, the American Academy of Family Physicians and others recommend psychotherapy and a steady increase in exercise.

But this approach can be harmful. According to a 2015 report from the Institute of Medicine, now the National Academy of Medicine, even minimal activity can cause patients prolonged exhaustion, muscle pain, cognitive problems and more. In severe cases, a short conversation or a trip to the bathroom can deplete patients for hours, days or more. In surveys, patients routinely report deterioration after a program of graded exercise. The psychotherapeutic intervention also encourages patients to increase their activity levels.

Many patients (including one of us) have remained ill for years or decades with chronic fatigue syndrome, also known as myalgic encephalomyelitis, or ME/CFS. It can be triggered by a viral infection, resulting in continuing or recurring immunological and neurological dysfunction. The Institute of Medicine dismissed any notion that it is a psychiatric illness.

Read the full article

The article concludes:

In short, this episode has damaged public trust in science.

Doctors and medical organizations must stop recommending these two therapies for ME/CFS as treatment options. Next, the disputed findings must be retracted. Finally, health agencies must ramp up funding for medical research to develop accurate diagnostic tests and pharmacological treatments.

A million Americans are waiting

Health rising blog post, by Cort Johnson, 2o March 2017: New York Times Opinion Piece Slams PACE Trial and Lancet

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Woman’s Hour features a woman with ME’s experience of being cared for

Posted on 03/17/2017 by wames

BBC Radio 4: Woman’s Hour, 15 March 2017 Anastasia, a woman with ME in her early 30s, talks about what its’ like to be cared for by her mother and how hard it is to ask for what she needs.

 

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A recumbent isometric yoga program for patients with severe CFS/ME

Posted on 03/17/2017 by wames

Research abstract:

BACKGROUND:

Our previous randomized controlled trial demonstrated that isometric yoga in a sitting position reduces fatigue in patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). However, some patients experience difficulties sitting or practicing isometric yoga in a sitting position for long periods. To date, therapeutic interventions for patients with severe symptoms have not been established. Therefore, we developed a recumbent isometric yoga program, which takes approximately 20 min to complete, designed to reduce fatigue in patients with severe CFS/ME. The aim of this pilot study was to assess the feasibility, safety, and usefulness of this program.

METHODS

This pilot study included 12 adult patients with CFS/ME. Six patients were reluctant to practice isometric yoga in a sitting position because of the severity of their fatigue (group 1). The remaining six patients had previously practiced isometric yoga in a sitting position (group 2). For 3 months, the patients of both groups practiced recumbent isometric yoga every 2 to 4 weeks with a yoga instructor and at home on other days if they could. The short-term effects of isometric yoga on fatigue were assessed using the Profile of Mood Status (POMS) questionnaire immediately before and after their final session with the yoga instructor. The long-term effects of isometric yoga on fatigue were assessed using the Chalder Fatigue Scale (FS) questionnaire before and after the intervention period. Adverse events, satisfaction with the program, and preference of yoga position (sitting or recumbent) were also recorded.

RESULTS

All subjects completed the intervention. In both groups, the POMS fatigue score was significantly decreased after practicing the 20-min yoga program and the Chalder FS score was decreased significantly after the 3-month intervention period. There were no serious adverse events. All subjects in group 2 preferred the recumbent isometric yoga program over a sitting yoga program.

CONCLUSIONS

This study suggests that recumbent isometric yoga is a feasible and acceptable treatment for patients with CFS/ME, even for patients who experience difficulty practicing isometric yoga in the sitting position.

Development of a recumbent isometric yoga program for patients with severe chronic fatigue syndrome/myalgic encephalomyelitis: a pilot study to assess feasibility and efficacy, by Takakazu Oka, Hisako Wakita , Keishin Kimura in BioPsychoSocial Medicine 3 March 2017

 

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People with ME/CFS don’t trust their GP to give them info on their condition

Posted on 03/17/2017 by wames

Healthwatch Trafford press release 17 March 2017: More than half of people in the UK with ME/CFS said they wouldn’t trust their GP to give them information on their condition

A revealing new report released today by Healthwatch Trafford shows the findings of a survey of people with Myalgic Encephalomyelitis(ME), also known as Chronic Fatigue Syndrome(CFS), to find out what their experience of the NHS was like.

The report ‘Tired of explaining : Experiences of services for ME/CFS patients in Trafford and Greater Manchester’ highlights the issues that people with the condition are finding and how that impacts upon them.

Key findings included:

  • More than a third of people in the UK diagnosed with ME/CFS get no information from the NHS (and 40% that did receive some information said it wasn’t useful)
  • Less than 10% of respondents in Greater Manchester felt inpatient hospital facilities were suitable for them
  • More than half in Greater Manchester said they wouldn’t trust their GP to provide them with information about the condition
  • 5% of people across the UK waited more than 2 years for a diagnosis, with a quarter in Greater Manchester waiting more than 5 years
  • 9% of respondents in Greater Manchester are unable to work or study because of their condition
  • 77% have had ME/CFS of 5 years or more, with 34.7% having had it for 15+

The survey had more than a thousand responses and attracted responses from people around the UK. Many people with the condition observe they are experiencing poor treatment, often making their condition worse.

ME/CFS as a condition has a number of issues that make its effective treatment very difficult. Chief amongst these is the fact that it isn’t really understood, and so many medical professionals and professional bodies cannot agree on what it is, its cause and what to do about it. This has lead to huge variation in its treatment, with some medical professionals treating it purely as a psychological problem, meaning the physical aspects are not addressed and vice versa.

A core issue is that many feel their GPs knowledge of the condition and treatment options is not adequate and often their attitudes towards it have been a major problem, with levels of trust in their GP amongst those with ME/CFS being low.

Adam Webb, the report’s author and Communications and Information officer for Healthwatch Trafford, said:

“We created this survey after hearing reports of people with the condition receiving poor treatment and aimed it at our local area. We didn’t expect there to be such a large response to it, but the strength of feeling expressed by the respondents shows there is a real issue with their treatment across the whole of the UK.

“Addressing the recommendations made in the report would go a long way to improve the lives and treatment of a large number of people who have felt misunderstood for so long.”

ME/CFS is thought to affects around 250,000[1] people in the UK and around 85% of respondents were women, largely reflecting the general incidence of the condition (four females to every one male[2]).

Andrew Latham, Chief Officer of Healthwatch Trafford said :

“This report highlights some of the very real issues that people with ME/CFS face on a daily basis, from initial diagnosis through to living with the condition for many years. The report shows that there are multiple issues to be addressed and that whilst our initial focus is on patients within Trafford, the high response rate to our survey shows that these are nationwide problems that cannot not be ignored.

“Healthwatch Trafford is committed to making sure that the issues people have told us about get heard by the people with the power to act on the recommendations made, both locally and nationally. We will share this data with providers and commissioners in Trafford and urge our colleagues in local Healthwatch throughout Greater Manchester and the rest of England to do the same. We hope that this can have a positive impact on how patients with ME/CFS access services and the treatment that they receive.”
Adam added :

“We are extremely grateful for the assistance of Manchester Metropolitan University in analysing the survey results”

Find the summary report here

Find the full report here

Notes:

[1] NHS Choices, http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

[2] ME Research UK, http://www.meresearch.org.uk/news/sex-differences-in-mecfs/

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Study shows that clinicians often overestimate potential benefits & underestimate harms

Posted on 03/16/2017 by wames

This review looked at the work of clinicians in general, not specifically in relation to ME or CFS.

Key Points:

Question:  Do clinicians have accurate expectations of the benefits and harms of treatments, tests, and screening tests?

Findings:  In this systematic review of 48 studies (13 011 clinicians), most participants correctly estimated 13% of the 69 harm expectation outcomes and 11% of the 28 benefit expectations. The majority of participants overestimated benefit for 32% of outcomes, underestimated benefit for 9%, underestimated harm for 34%, and overestimated harm for 5% of outcomes.

Meaning:  Clinicians rarely had accurate expectations of benefits or harms, with inaccuracies in both directions, but more often underestimated harms and overestimated benefits.

Review abstract:

Importance:   Inaccurate clinician expectations of the benefits and harms of interventions can profoundly influence decision making and may be contributing to increasing intervention overuse.

Objective:    To systematically review all studies that have quantitatively assessed clinicians’ expectations of the benefits and/or harms of any treatment, test, or screening test.

Evidence Review:    A comprehensive search strategy of 4 databases (MEDLINE, EMBASE, Cumulative Index of Nursing and Allied Health Literature, and PsycINFO) from the start years to March 17-20, 2015, with no language or study type restriction, was performed. Searches were also conducted on cited references of the included studies, and experts and study authors were contacted. Two researchers independently evaluated methodologic quality and extracted participants’ estimates of benefit and harms and authors’ contemporaneous estimates.

Findings:    Of the 8166 records screened, 48 articles (13 011 clinicians) were eligible. Twenty studies focused on treatment, 20 on medical imaging, and 8 on screening. Of the 48 studies, 30 (67%) assessed only harm expectations, 9 (20%) evaluated only benefit expectations, and 6 (13%) assessed both benefit and harm expectations. Among the studies comparing benefit expectations with a correct answer (total of 28 outcomes), most participants provided correct estimation for only 3 outcomes (11%). Of the studies comparing expectations of harm with a correct answer (total of 69 outcomes), a majority of participants correctly estimated harm for 9 outcomes (13%). Where overestimation or underestimation data were provided, most participants overestimated benefit for 7 (32%) and underestimated benefit for 2 (9%) of the 22 outcomes, and underestimated harm for 20 (34%) and overestimated harm for 3 (5%) of the 58 outcomes.

Conclusions and Relevance:    Clinicians rarely had accurate expectations of benefits or harms, with inaccuracies in both directions. However, clinicians more often underestimated rather than overestimated harms and overestimated rather than underestimated benefits. Inaccurate perceptions about the benefits and harms of interventions are likely to result in suboptimal clinical management choices.

Clinicians’ Expectations of the Benefits and Harms of Treatments, Screening, and Tests: a Systematic Review, by Tammy C. Hoffmann, PhD; Chris Del Mar, MD, FRACGP
in JAMA Intern Med. 2017;177(3):407-419

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Dr Ron Davis’s strategic approach to understand ME/CFS

Posted on 03/16/2017 by wames

Health rising blog post, by Cort Johnson, 8 March 2017: Ron Davis’s Strategic Approach To Understand Chronic Fatigue Syndrome (ME/CFS)

The Open Medicine Foundation released two videos of Ron Davis talking about their work over the past couple of weeks. I got a chance to talk to Davis twice since then and to flesh out a bit more what he’s doing right now.

As most people probably know, the Davis group’s working hypothesis right now is that problems with glycolysis – the process producing many of the raw materials the mitochondria use for energy – is impaired in chronic fatigue syndrome (ME/CFS). Their data is leading them to suspect an enzyme called pyruvate kinase is this issue. The Fluge/Mella group has come to a similar conclusion, but they’re more focused on a different enzyme called pyruvate dehydrogenase.

Both are coming to the conclusions in an indirect sort of way. Fluge and Mella’s amino acid metabolism results suggested problems with glycolysis were present. Davis’ experiments and metabolomics results suggest the same. Davis noted, though, that neither is directly measuring the performance of the enzymes that break down pyruvate.

Davis’s forte is creating new technologies. Named one of the great inventors of the century by the Atlantic, he created many of the tools that made the Human Genome Project possible. George Church, a Harvard professor, called him a “frequent provider of disruptive core technologies”.

It’s no surprise, then, that Davis has been creating new tools to help him better understand the energy depletion process he believes lies at the core of ME/CFS. Davis is guided by two ancillary goals as he does this: to make the tools as cheaply as possible to avoid the problems with funding that come with ME/CFS, and to produce “fast assays” he can use to test as many potential treatments as quickly as possible…

A Strategic Approach
Davis’ strategic approach (so far as I understand it) to understanding and finding ways to impact the energy problem in ME/CFS patients’ cells has been the following:

(1) First he found a way to assess our cells ability to generate energy by putting them under salt stress (the sodium chloride test)

(2) He then created a tool or tools (electrical impedance, magnetic levitation) which he can use to measure their energy status or health (electrical impedance, magnetic floatation).

(3) With these two tools he can put cells under stress, add possible treatments to them and see if they respond.

(3) After tests suggested that something in ME/CFS patients’ blood was inhibiting their cellular energy production, Davis began filtering their blood to see if he could remove the substance. He found that he could and that a large molecule or protein was likely responsible for blocking the cells’ energy.

(4) Using what he’s learned about the energy production problems Davis began to add substances to the serum to see what would allow the ME/CFS cells to tolerate the salt stress. He’s found two substances so far. He’s also begun to test those substances in a wide variety of patients and people with other fatiguing illnesses to determine if the same issues are present in them.

(5) Davis also used the scientific literature to come up with a list of drugs that might help. He’s testing about a hundred of them in the serum now.

(6) A next step is to be able to create the ability to quickly test many numbers of cells and substances at once.

(7) Drugs or substances that pass the test will give him clues about what’s going on and will provide the foundation for further tests. A variety of problems may be found.

Read the full article
Open Medicine video lecture, 20 Feb 2017: An update on ME/CFS research with Dr Ronald W Davis

Open Medicine video lecture, 7 March 2017: Q&A on ME/CFS Research with Dr. Ron Davis

Transcript of Q & A Regarding 21 Feb 2017 Research Update Video with Dr.
Ronald W. Davis

Open Medicine Foundation says:

Dr. Davis’ team has made exciting breakthroughs in understanding the molecular basis of this devastating disease. The team is now poised to unravel the complexity of CFS and start identifying potential treatments. Significant funding is needed for this to happen and your donations at every amount are critical in our mission to find treatments and a cure as fast as possible.  Click to donate online

 

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Patients diagnosed with ME/CFS also fit SEID criteria

Posted on 03/15/2017 by wames

Research abstract:

Background:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) remains undiagnosed in up to 91% of patients. Recently, the United States-based Institute of Medicine (IOM) developed new diagnostic criteria, naming it systemic exertion intolerance disease (SEID).

Purpose:
We examined how subjects fit SEID criteria and existing ME/CFS case definitions early in their illness.

Methods
A total of 131 subjects fitting 1994 Fukuda CFS criteria at the time of study recruitment completed a survey of symptoms they experienced during their first 6 months of illness. Symptoms were drawn from SEID and existing criteria (1994 Fukuda, 2003 Canadian Consensus Criteria (CCC), and 2011 Myalgic Encephalomyelitis-International Consensus Criteria (ME-ICC)).

We calculated and compared the number/percentage of subjects fitting single or combinations of case definitions and the number/percentage of subjects with SEID experiencing orthostatic intolerance (OI) and/or cognitive impairment.

Results
At 6 months of illness, SEID criteria identified 72% of all subjects, similar to when Fukuda criteria (79%) or the CCC (71%) were used, whereas the ME-ICC selected for a significantly lower percentage (61%, p < .001). When severity/frequency thresholds were added to the Fukuda criteria, CCC and ME-ICC, the percentage of these subjects also fitting SEID criteria increased to 93%, 97%, and 95%. Eighty-seven percent of SEID subjects endorsed cognitive impairment and 92%, OI; 79% experienced both symptoms.

Conclusions
SEID criteria categorize a similar percentage of subjects as Fukuda criteria early in the course of ME/CFS and contain the majority of subjects identified using other criteria while requiring fewer symptoms. The advantage of SEID may be in its ease of use.

Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria, by Lily Chu, Jane L. Norris, Ian J. Valencia & Jose G. Montoya in Fatigue: Biomedicine, Health & Behavior [Published online: 13 Mar 2017]

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Cellular immune responses in post-giardiasis CFS

Posted on 03/15/2017 by wames

Research abstract:

BACKGROUND:
The role of pathogen specific cellular immune responses against the eliciting pathogen in development of post-infectious chronic fatigue syndrome (PI-CFS) is not known and such studies are difficult to perform.

The aim of this study was to evaluate specific anti-Giardia cellular immunity in cases that developed CFS after Giardia infection compared to cases that recovered well.

Patients reporting chronic fatigue in a questionnaire study three years after a Giardia outbreak were clinically evaluated five years after the outbreak and grouped according to Fukuda criteria for CFS and idiopathic chronic fatigue.

Giardia specific immune responses were evaluated in 39 of these patients by proliferation assay, T cell activation and cytokine release analysis. 20 Giardia exposed non-fatigued individuals and 10 healthy unexposed individuals were recruited as controls.

RESULTS:
Patients were clinically classified into CFS (n = 15), idiopathic chronic fatigue (n = 5), fatigue from other causes (n = 9) and recovered from fatigue (n = 10). There were statistically significant antigen specific differences between these Giardia exposed groups and unexposed controls. However, we did not find differences between the Giardia exposed fatigue classification groups with regard to CD4 T cell activation, proliferation or cytokine levels in 6 days cultured PBMCs. Interestingly, sCD40L was increased in patients with PI-CFS and other persons with fatigue after Giardia infection compared to the non-fatigued group, and correlated well with fatigue levels at the time of sampling.

CONCLUSION:
Our data show antigen specific cellular immune responses in the groups previously exposed to Giardia and increased sCD40L in fatigued patients.

Giardia-specific cellular immune responses in post-giardiasis chronic fatigue syndrome, by K Hanevik, E Kristoffersen, KP Rye, S Sørnes, S Svärd, O Bruserud, N Langeland in BMC Immunol. 2017 Jan 28;18(1):5

 

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WAMES AGM 1 April 2017 – your contribution invited

Posted on 03/14/2017 by wames

The WAMES AGM will take place on 1st April 2017. This will be a short business meeting to report on the activities of the past year and plan the priorities for the coming year. Attracting funding and volunteers is our current priority. Without them we will be unable to maintain and develop all our campaigning, information and support activities.

Contact Jan jan@wames.org.uk if you have any comments about WAMES, issues you would like the committee to consider or ideas for funding and recruitment.

We would love to hear from anyone who would like to take part in our mission to:

make a difference for ME in Wales

as a trustee on the management committee, a volunteer, small steps supporter, fundraiser or donor.

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