The ‘cognitive behavioural model’ of CFS: critique of a flawed model

Posted on 04/30/2019 by wames

The ‘Cognitive Behavioural Model’ of Chronic Fatigue Syndrome: critique of a flawed model, by Keith Geraghty, Leonard Jason, Madison Sunnquist, David Tuller, Charlotte Blease & Charles Adeniji in Journal of Health Psychology,  April 23 2019

 

Review abstract:
Chronic fatigue syndrome/myalgic encephalomyelitis is a debilitating illness that greatly impacts the lives of sufferers. A cognitive behavioural model attempts to explain illness onset and continuance with a hypothesis that the illness is perpetuated by patients’ irrational beliefs and avoidance behaviours. This theory underpins the promotion of cognitive behavioural therapy, a treatment that aims to change beliefs and behaviours.

This paper reports on a detailed review of the cognitive behavioural model (CBM). Our review finds that the model lacks high-quality evidential support, conflicts with accounts given by most patients, and fails to account for accumulating biological evidence of pathological and physiological abnormalities found in patients. There is little scientific credibility in the claim that psycho-behavioural therapies are a primary treatment for this illness.

Conclusion:
In this article, we reviewed the CBM of ME/CFS. This model is often cited in the literature as a model to guide clinical practice and treatment of this illness. We find this model to be primarily an idealised narrative model. It exists as a dogmatic model favoured by model promoters. Our review exposes stark weaknesses, inconsistencies and contradictions, both in its theoretical underpinnings and the research said to prove model validity. Our findings suggest the CBM is not fit for purpose, as it poorly reflects the accounts given by patients and it ignores the wealth of evidence showing biological, immune and neurological dysfunction in ME/CFS.

Given that the CBM is cited as the basis for CBT and GET interventions, there is an urgent need for clinicians, therapists and health providers to review this treatment paradigm. Our findings help explain why so many patients reject psychotherapy. An alternative model should be formulated to better explain the biological factors that predispose, precipitate and perpetuate the illness. An explanatory model needs to closely resemble illness pathogenesis and provide logic-driven linkages between factors, including patients’ symptoms and illness behaviours.

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A nanoelectronics-blood-based diagnostic biomarker for ME/CFS

Posted on 04/30/2019 by wames

A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), by R Esfandyarpour, A Kashi, M Nemat-Gorgani, J Wilhelmy, and R W Davis in PNAS April 2019 [https://doi.org/10.1073/pnas.1901274116]

 

Significance:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease which afflicts approximately 2 million people in the United States and many more around the globe. A combination of factors might trigger ME/CFS, and there is currently no well-established blood-based biomarker to diagnose it.

Taking advantage of advancements in micro/nanofabrication, direct electrical detection of cellular and molecular properties, microfluidics, and artificial intelligence techniques, we developed a nanoelectronics blood-based assay that can potentially establish a diagnostic biomarker and a drug-screening platform for ME/CFS. Given the significance of this assay, we envision it has the potential to be widely employed in research laboratories and clinics in the future as an aid to physicians as well as to our colleagues in the ME/CFS research community.

Research abstract:

There is not currently a well-established, if any, biological test to diagnose myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The molecular aberrations observed in numerous studies of ME/CFS blood cells offer the opportunity to develop a diagnostic assay from blood samples. Here we developed a nanoelectronics assay designed as an ultrasensitive assay capable of directly measuring biomolecular interactions in real time, at low cost, and in a multiplex format.

To pursue the goal of developing a reliable biomarker for ME/CFS and to demonstrate the utility of our platform for point-of-care diagnostics, we validated the array by testing patients with moderate to severe ME/CFS patients and healthy controls. The ME/CFS samples’ response to the hyperosmotic stressor observed as a unique characteristic of the impedance pattern and dramatically different from the response observed among the control samples. We believe the observed robust impedance modulation difference of the samples in response to hyperosmotic stress can potentially provide us with a unique indicator of ME/CFS. Moreover, using supervised machine learning algorithms, we developed a classifier for ME/CFS patients capable of identifying new patients, required for a robust diagnostic tool.

News stories:

Stanford Medicine newsblog: Biomarker for chronic fatigue syndrome identified Stanford scientists devised a blood-based test that accurately identified people with chronic fatigue syndrome, a new study reports.  Apr 29 2019

Stanford Medicine SCOPE: First diagnostic test for chronic fatigue syndrome identified Apr 29 2019

News Medical Life sciences: Blood based test using AI and nanotechnology devised for chronic fatigue syndrome Apr 29 2019

Medscape: Biomarker May Be a Diagnostic Test for ME/CFS   Apr 29 2019

Science daily: Biomarker for chronic fatigue syndrome  Apr 29 2019

Daily mail: A chronic fatigue syndrome blood test can finally prove people really do suffer from the mystery disorder, study says Apr 29 2019

Independent: Blood test for chronic fatigue syndrome could speed diagnosis, study says Apr 30 2019

Telegraph: Row over chronic fatigue syndrome after Stanford scientists develop a test that ‘proves condition exists’  Apr 30 2019

Science media centre: expert reaction to study investigating a potential biomarker for chronic fatigue syndrome / ME  Apr 29 2019

“This research is interesting, and if it can be the start of developing a blood-based diagnostic marker for ME/CFS, that would be great.  But it’s important to understand that this is only a pilot study.  There’s a long way to go, with many possible pitfalls that could still derail the development, before it gets to something that’s useful in practice.” Prof Kevin Conway

 

 

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ME Awareness Week, 6-12 May 2019- what can WE do?

Posted on 04/29/2019 by wames

WAMES in Awareness week

From Saturday 6th to Friday 12th May – this year’s ME awareness week – WAMES will be continuing our efforts to raise awareness and inform doctors about ME, as part of our campaign to improve diagnosis in Wales.

As individuals what can we do?

Go Blue – clothes, buildings, hair, ribbons etc. all make a statement and invite conversations about what ME is really like. Do you know a building near you that lights up at night? Why not ask them to go blue?

Unrest – Encourage people to attend the Unrest screening in Bangor on ME Awareness day, the 12th May.

 

Protest virtually with WAMES and #MillionsMissing

Tell your story – send it to the media, blogs, your FB page or send it to WAMES and we will post it on the WAMES website and use it in our campaign.

 

Share your plans, photos etc. so we can all see ME in the spotlight in Wales.

 

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Duvet woman versus action man: the gendered aetiology of CFS according to English newspapers

Posted on 04/26/2019 by wames

Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers, by Rebecca Murray, Katy Day & Jane Tobbell  in Feminist Media Studies [Published online: 15 Apr 2019
https://doi.org/10.1080/14680777.2019.1595694]

Media portrayals of conditions such as Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) demand exploration as the media is a potent source of information and meaning, and as such has the potential to inform public and professional understandings. To date, there is little systematic exploration of print media representations of CFS/ME.

In this study, we address that gap by exploring the voices of CFS/ME sufferers in the English printmedia (1998–2015) from a constructionist feminist perspective. We found that portrayals of CFS/ME differ meaningfully, depending on gender. The psychological and emotional tended to be foregrounded where women were concerned and the scepticism surrounding CFS/ME as a “non disease” was much more evident. On some occasions this was dealt with directly, whilst on others it was “leaked in” or hinted at. This serves to delegitimise the illness in women.

In contrast, the physical was usually foregrounded in the case of men suffering from the condition and their experiences were accredited greater legitimacy. We problematise these representations and discuss the potential impact upon public and professional sympathy, treatment options and long-standing, gendered constructions of illness.

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Endocrine immune regulation in… women with CFS

Posted on 04/24/2019 by wames

Leveraging prior knowledge of endocrine immune regulation in the therapeutically relevant phenotyping of women with Chronic Fatigue Syndrome, by Matthew C Morris, Katherine Cooney, Hooman Sedghamiz, Maria Abreu, Fanny Collado, Elizabeth G Balbin, Travis JA Craddock, Nancy G Klimas, Gordon Broderick, Mary Ann Fletcher in Clinical Therapeutics, vol 41, issue 4, April 2019, pp 656-674.e4 [https://doi.org/10.1016/j.clinthera.2019.03.002]

 

Research abstract:

Purpose:
The complex and varied presentation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has made it difficult to diagnose, study, and treat. Its symptoms and likely etiology involve multiple components of endocrine and immune regulation, including the hypothalamic-pituitary-adrenal axis, the hypothalamic-pituitary-gonadal axis, and their interactive oversight of immune function.

We propose that the persistence of ME/CFS may involve changes in the regulatory interactions across these physiological axes. We also propose that the robustness of this new pathogenic equilibrium may at least in part explain the limited success of conventional single-target therapies.

Methods:
A comprehensive model was constructed of female endocrine–immune signaling consisting of 28 markers linked by 214 documented regulatory interactions. This detailed model was then constrained to adhere to experimental measurements in a subset of 17 candidate immune markers measured in peripheral blood of patients with ME/CFS and healthy control subjects before, during, and after a maximal exercise challenge. A set of 26 competing numerical models satisfied these data to within 5% error.

Findings:
Mechanistically informed predictions of endocrine and immune markers that were either unmeasured or exhibited high subject-to-subject variability pointed to possible context-specific overexpression in ME/CFS at rest of corticotropin-releasing hormone, chemokine (C-X-C motif) ligand 8, estrogen, follicle-stimulating hormone (FSH), gonadotropin-releasing hormone 1, interleukin (IL)-23, and luteinizing hormone, and underexpression of adrenocorticotropic hormone, cortisol, interferon-γ, IL-10, IL-17, and IL-1α.

Simulations of rintatolimod and rituximab treatment predicted a shift in the repertoire of available endocrine–immune regulatory regimens. Rintatolimod was predicted to make available substantial remission in a significant subset of subjects, in particular those with low levels of IL-1α, IL-17, and cortisol; intermediate levels of progesterone and FSH; and high estrogen levels. Rituximab treatment was predicted to support partial remission in a smaller subset of patients with ME/CFS, specifically those with low norepinephrine, IL-1α, chemokine (C-X-C motif) ligand 8, and cortisol levels; intermediate FSH and gonadotropin-releasing hormone 1 levels; and elevated expression of tumor necrosis factor-α, luteinizing hormone, IL-12, and B-cell activation.

Implications:
Applying a rigorous filter of known signaling mechanisms to experimentally measured immune marker expression in ME/CFS has highlighted potential new context-specific markers of illness. These novel endocrine and immune markers may offer useful candidates in delineating new subtypes of ME/CFS and may inform on refinements to the inclusion criteria and instrumentation of new and ongoing trials involving rintatolimod and rituximab treatment protocols.

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Cellular immune function in ME/CFS: increased MAIT cell frequency

Posted on 04/17/2019 by wames

Cellular immune function in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), by Jacqueline M Cliff, Elizabeth C King, Ji-Sook Lee, Nuno Sepulveda, Asia-Sofia Wolf, Caroline Kingdon, Erinna Bowman, Hazel M. Dockrell, Luis C. Nacul, Eliana Lacerda, Eleanor Riley in Front. Immunol., 16 April 2019, https://doi.org/10.3389/fimmu.2019.00796

Research abstract:

Lead author Dr Jackie Cliff

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition with unknown aetiology, unclear pathophysiology and with no diagnostic test or biomarker available. Many patients report their ME/CFS began after an acute infection, and subsequent increased
frequency of infections, such as colds or influenza, is common. These factors imply an altered immunological status exists in ME/CFS, in at least a proportion of patients, yet previous studies of peripheral
immunity have been discrepant and inconclusive.

The UK ME/CFS Biobank, which has collected blood samples from nearly 300 clinically-confirmed ME/CFS patients, enables large-scale studies of immunological function in phenotypically well-characterised participants. In this study, herpes virus serological status and T cell, B cell, NK cell and monocyte populations were investigated in 251 ME/CFS patients, including 54 who were severely affected, and compared with those from 107 healthy participants and with 46 patients with Multiple Sclerosis. There were no differences in seroprevalence for six human herpes viruses between ME/CFS and healthy controls, although seroprevalence for the Epstein-Barr virus was higher in multiple sclerosis patients.

Contrary to previous reports, no significant differences were observed in NK cell numbers, subtype proportions or in vitro responsiveness between ME/CFS patients and healthy control participants. In contrast, the T cell compartment was altered in ME/CFS, with reduced proportions of effector memory CD8+ T cells and of intermediately differentiated CD8+ T cells in ME/CFS. Conversely, there as a significantly increased proportion of mucosal associated invariant cells (MAIT) cells, especially in severely affected ME/CFS patients.

These abnormalities demonstrate that an altered immunological state does exist in ME/CFS, particularly in severely affected people. This may simply reflect ongoing or recent infection, or may indicate future increased susceptibility to infection. Longitudinal studies of ME/CFS patients are needed to help to determine cause and effect and thus any
potential benefits of immuno-modulatory treatments for ME/CFS.

Lay summary: Increased MAIT cell frequency in ME/CFS

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Evidence of clinical pathology abnormalities in people with ME/CFS…

Posted on 04/15/2019 by wames

Evidence of clinical pathology abnormalities in people with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) from an analytic cross-sectional study, by Luis Nacul, Barbara de Barros, Caroline C Kingdon, Jacqueline M Cliff, Taane G Clark, Kathleen Mudie, Hazel M Dockrell, Eliana M Lacerda in Diagnostics Vol 9, #2, p 41 [April 10, 2019]

 

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease presenting with extreme fatigue, post-exertional malaise, and other symptoms. In the absence of a diagnostic biomarker, ME/CFS is diagnosed clinically, although laboratory tests are routinely used to exclude alternative diagnoses.

In this analytical cross-sectional study, we aimed to explore potential haematological and biochemical markers for ME/CFS, and disease severity. We reviewed laboratory test results from 272 people with ME/CFS and 136 healthy controls participating in the UK ME/CFS Biobank (UKMEB).

After corrections for multiple comparisons, most results were within the normal range, but people with severe ME/CFS presented with lower median values (p < 0.001) of serum creatine kinase (CK; median=54 U/L), compared to healthy controls (HCs; median=101.5 U/L) and non-severe ME/CFS (median=84 U/L). The differences in CK concentrations persisted after adjusting for sex, age, body mass index, muscle mass, disease duration, and activity levels (odds ratio (OR) for being a severe case=0.05 (95% confidence interval (CI)=0.02-0.15) compared to controls, and OR=0.16 (95% CI=0.07-0.40), compared to mild cases).

This is the first report that serum CK concentrations are markedly reduced in severe ME/CFS, and these results suggest that serum CK merits further investigation as a biomarker for severe ME/CFS.

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Dr Nina Muirhead asks doctors to believe in ME

Posted on 04/12/2019 by wames

Royal College of Physicians blog, 10 April 2019: Do you really believe in ME?

With many in the medical profession misunderstanding ME, Dr Nina Muirhead recounts her own experience with the illness and how it reshaped her understanding of it. Dr Nina Muirhead is a dermatologist in Buckinghamshire Healthcare NHS Trust and a research supervisor at Cardiff medical school.

Introduction:

Many doctors can find themselves in the position of the patient, and being informed of one’s own diagnosis can be a frightening and emotional experience. Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in.

Ten months after developing acute Epstein Barr Virus Glandular Fever I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by my outstanding and well-informed GP. Prior to becoming ill, I had a vague notion that ME/CFS was an illness related to deconditioning. How wrong I was. The NICE guidelines had perpetuated my misunderstanding of ME/CFS by recommending Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET).

The NICE guidelines had perpetuated my misunderstanding of ME/CFS by recommending Cognitive Behavioural Therapy and Graded Exercise

From my experience of ME/CFS there was no psychological component whatsoever, besides which exercise, if anything, was making me worse not better. I was not deconditioned or frightened to exercise. The symptoms were more consistent with a brain tumour or multiple sclerosis. The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42.

Read the full blog

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Meeting the educational needs of young ME/CFS patients: role of the treating physician

Posted on 04/10/2019 by wames

Meeting the educational needs of young, ME/CFS patients: role of the treating physician, by Faith R. Newton in Front. Pediatr., 02 April 2019 https://doi.org/10.3389/fped.2019.00104

 

Article introduction:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling, chronic disease characterized by the body’s inability to produce sufficient energy for normal everyday activities.

Children with ME/CFS experience debilitating fatigue referred to as post-exertional malaise (PEM) after minimal mental or physical exertion which is not relieved by sleep. It can significantly reduce the ability of the child to take part in personal, educational, or social activities and can compromise executive function, and can result in a moderate to severe disability.

As many as 1% of school-age children suffer from this disease in varying degrees of severity, and ME/CFS has been shown to negatively impact school attendance, participation, connectedness, and academic performance (1). Some studies suggest that ME/CFS may be the major cause of extended school absences (2).

Whereas, the literature supplying practice-based guidance for other chronic conditions affecting children in school, such as Autism and Attention Deficit Hyperactivity Disorder (ADHD) will be found in educational journals, very little guidance for students with ME/CFS appears in the clinical medicine literature. Although school nurses are beginning to play a larger role in supporting these children, physicians or healthcare providers retain primary responsibility of informing the school system of the needed adjustments for the young ME/CFS patient to succeed in the school environment.

This article argues that the physician has a much broader responsibility to provide diagnostic, symptomatic, and treatment information about ME/CFS than they would with other conditions such as Autism or ADHD that qualify students for special services. For students with ME/CFS, the physician’s letter required in the school’s evaluation process is a critical resource to advise and guide education professionals regarding appropriate student placement, classroom support, and instructional accommodations or modifications. The specifics of what should be included in a model physician’s letter are included.

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FM, CFS & MCS: illness experiences

Posted on 04/09/2019 by wames

Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences, by Almudena Alameda Cuesta, Álvaro Pazos Garciandía, Cristina Oter Quintana in Clinical Nursing Research [First Published March 27, 2019] https://doi.org/10.1177/1054773819838679

Research abstract:

Fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, and multiple chemical sensitivity can be considered contested illnesses. The questioning of the status of these conditions as real diseases reduces feelings of legitimacy in those affected.

The purpose of this study was to analyze subjectivity construction processes in people with these diseases.

A qualitative exploratory study was conducted from the perspective of hermeneutic phenomenology and ethnosociology. We used life stories for compiling data (13 informants were interviewed face-to-face), and sociological discourse analysis was developed.

Three main categories were identified: (a) self and grieving; (b) images and practices relating to fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, and multiple chemical sensitivity; and (c) relationships with health professionals.

This study shows that daily experiences of people living with these diseases are marked by stigmatization processes. The ultimate purpose of nursing care for people with these conditions should be to reduce their vulnerability and exclusion.

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