Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia

Posted on 03/04/2020 by wames

Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia: a quantitative, controlled study using Doppler echography, by C (Linda) MC van Campen, Freek WA Verheugt, Peter C Rowe, Frans C Visser in Clinical Neurophysiology Practice Vol 5, 2020, pp 50-58 [https://doi.org/10.1016/j.cnp.2020.01.003]

 

Highlights:

  • Extracranial Doppler technique to measure cerebral blood flow is feasible during head-up tilt testing.
  • Cerebral blood flow in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients is reduced during head-up tilt testing compared to healthy volunteers.
  • Using a lower limit of normal of the cerebral blood flow reduction during head-up tilt testing of 13%, 90 percent of ME/CFS patients showed an abnormal cerebral blood flow reduction.
  • Reduction in cerebral blood flow is correlated with symptoms of orthostatic intolerance.

Research abstract:

Objective:

The underlying hypothesis in orthostatic intolerance (OI) syndromes is that symptoms are associated with cerebral blood flow (CBF) reduction. Indirect CBF measurements (transcranial Doppler flow velocities), provide inconsistent support of this hypothesis. The aim of the study was to measure CBF during a 30 min head-up tilt test (HUT), using
Doppler flow imaging of carotid and vertebral arteries, in individuals with chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), a condition with a high prevalence of OI.

Methods:
429 ME/CFS patients were studied: 247 had a normal heart rate (HR) and blood pressure (BP) response to HUT, 62 had delayed orthostatic hypotension (dOH), and 120 had postural orthostatic tachycardia syndrome (POTS). We also studied 44 healthy controls (HC). CBF measurements were made at mid-tilt and end-tilt. Before mid-tilt, we
administered a verbal questionnaire to ascertain for 15 OI symptoms.

Results:
End-tilt CBF reduction was 7% in HC versus 26% in the overall ME/CFS group, 24% in patients with a normal HR/BP response, 28% in those with dOH, and 29% in POTS patients (all P<.0005). Using a lower limit of normal of 2SD of CBF reduction in HC (13% reduction), 82% of patients with normal HR/BP response, 98% with dOH and 100% with POTS showed an abnormal CBF reduction. There was a linear correlation of summed OI
symptoms with the degree of CBF reduction at mid-tilt (P<.0005).

Conclusions:
During HUT, extracranial Doppler measurements demonstrate that CBF is reduced in ME/CFS patients with POTS, dOH, and even in those without HR/BP abnormalities.

Significance:
This study shows that orthostatic intolerance symptoms are related to CBF reduction, and that the majority of ME/CFS patients (90%) show an abnormal cerebral flow reduction during orthostatic stress testing. This may have implications for the diagnosis and treatment of ME/CFS patients.

Comment: Could Improved Testing for Orthostatic Intolerance Lead to Better Clinical Care for People with ME/CFS?

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Systematic review & meta-analysis of the prevalence of CFS/ME

Posted on 03/03/2020 by wames

Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) by Eun-Jin Lim, Yo-Chan Ahn, Eun-Su Jang, Si-Woo Lee, Su-Hwa Lee & Chang-Gue Son in Journal of Translational Medicine vol 18, no. 100, 24 Feb 2020

 

Review abstract:

Background:
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been emerging as a significant health issue worldwide. This study aimed to systemically assess the prevalence of CFS/ME in various aspects of analyses for precise assessment.

Methods:
We systematically searched prevalence of CFS/ME from public databases from 1980 to December 2018. Data were extracted according to 7 categories for analysis: study participants, gender and age of the participants, case definition, diagnostic method, publication year, and country of the study conducted. Prevalence data were collected and counted individually for studies adopted various case definitions. We analyzed and estimated prevalence rates in various angles: average prevalence, pooled prevalence and meta-analysis of all studies.

Results:
A total of 1291 articles were initially identified, and 45 articles (46 studies, 56 prevalence data) were selected for this study. Total 1085,976 participants were enrolled from community-based survey (540,901) and primary care sites (545,075). The total average prevalence was 1.40 ± 1.57%, pooled prevalence 0.39%, and meta-analysis 0.68% [95% CI 0.48–0.97].

The prevalence rates were varied by enrolled participants (gender, study participants, and population group), case definitions and diagnostic methods. For example, in the meta-analysis; women (1.36% [95% CI 0.48–0.97]) vs. men (0.86% [95% CI 0.48–0.97]), community-based samples (0.76% [95% CI 0.53–1.10]) vs. primary care sites (0.63% [95% CI 0.37–1.10]), adults ≥ 18 years (0.65% [95% CI 0.43–0.99]) vs. children and adolescents < 18 years (0.55% [95% CI 0.22–1.35]), CDC-1994 (0.89% [95% CI 0.60–1.33]) vs. Holmes (0.17% [95% CI 0.06–0.49]), and interviews (1.14% [95% CI 0.76–1.72]) vs. physician diagnosis (0.09% [95% CI 0.05–0.13]), respectively.

Conclusions:
This study comprehensively estimated the prevalence of CFS/ME; 0.89% according to the most commonly used case definition CDC-1994, with women approximately 1.5 to 2 folds higher than men in all categories. However, we observed the prevalence rates are widely varied particularly by case definitions and diagnostic methods. An objective diagnostic tool is urgently required for rigorous assessment of the prevalence of CFS/ME.

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Coronavirus & ME

Posted on 03/02/2020 by wames

A new Virus and ME, a blog post in Occupy ME, by Jennie Spotila, 28 Feb 2020

 

Extract from blog post:

What Do I Do?
As of today, there are no special recommendations for immune compromised people on how to avoid COVID-19 infection. Common sense suggests, though, that anyone with a compromised or wonky immune system should be extra careful. That includes people with ME or other immune illnesses, people over 65, people undergoing chemotherapy, etc. The good news is that you probably know at least one thing you can do to protect yourself from SARS-CoV-2 because you already know how to protect yourself from influenza, and the prevention measures are similar.

#1: Wash your hands.

Seriously, wash your hands. Use soap and water, and wash your hands for at least 20 seconds after using the bathroom or blowing your nose/sneezing. I also wash my hands before using a restroom in a public place. Edited to add: this is a fabulous video that demonstrates proper hand-washing technique. Wash your hands before eating. Wash your hands when you get home from a public place. If there is no soap and water available, use an alcohol-based sanitizer with at least 60% alcohol.

#2 Don’t touch your face.

If you are out in public, don’t touch your eyes, nose, or mouth. Once you start to pay attention to it, you will be amazed how many times you do this. But if you are in public–especially in a healthcare setting–don’t!

#3 Practice cough and sneeze etiquette.

Cough or sneeze into a tissue, and then throw the tissue away. Then wash or sanitize your hands. If you don’t have a tissue, try to cover your mouth with your elbow instead of your hand.

#4 Avoid sick (or potentially sick) people.

If someone you know is sick, especially with a respiratory illness, it’s better not to be in close contact with them. That can be hard if the sick person lives with you or is your carer, but try to minimize your exposure (and everybody should be washing their hands). It’s a good idea to avoid large numbers of people during flu season, if you can. Be especially careful to avoid coughing/sneezing people in healthcare settings. Don’t shake hands with people, either.

#5 Ask others to practice good hygiene/infection control.

People who visit you, live with you, or help care for you should all practice the same infection control measures. They should wash their hands upon entering your living space and before preparing your food. They should cough and sneeze into tissues, throw the tissues away, and then wash their hands. If they are sick–or if someone in their families is sick–then it is best for them to stay away. This is especially true for caregivers of severely ill ME patients. Caregivers must practice good hygiene and infection control measures.

#6 Sick people should wear masks.

CDC does not recommend that well people wear masks to protect themselves from SARS-CoV-2 (or influenza). However, people who are sick should wear masks to protect against infecting others. Note that commonly available surgical masks do not filter out most viruses because the particles are too small. The masks that are rated N95 or better will filter viruses, but they are hard to find (or the prices have been jacked up). N95 masks are also supposed to be fitted to the individual and then tested, and most people are not doing that.

#7 Have some supplies on hand, but don’t go crazy.

Some experts have recommended preparing the same way you would for a big storm: have nonperishable food and a two week supply of medications on hand. I wish one of them would tell my health insurance company that so I can actually get the two week supply ahead of schedule. Keeping easy to prepare food on hand is always a good idea for people with ME anyway, since we never know when a crash will make food shopping and prep impossible.

#8 Prepare for disruption of your routine.

I have personally found the angsting over quarantine to be a bit ableist, since millions of people with serious health conditions (including ME) are already living partially or entirely as if we are quarantined. Being told to stay at home is redundant for those of us that rarely leave it. However, restrictions on who can come to us, especially those who live alone and depend on outside help, would have a significant impact. Thinking through your backup plans in advance is a good idea. Can you get groceries delivered? What are your options for getting medications or other essential items if you can’t go out for a week or more? If the person/people who help you were unavailable, do you have backup help?

#9 Make a healthcare plan.

You may not be able to get to your doctor’s office easily even on a good day, if you have ME. If you are sick with an acute illness on top of ME, it will be even harder. Does your doctor offer any virtual services, such as video or phone consults? Make a plan with your primary care doctor or nearby urgent care so that you can get tested and treated if you have symptoms of any flu-like illness.

#10 Do not delay seeking healthcare.

Flu-like symptoms that might be of less concern in a healthy person can be very serious for people with ME, so consulting a healthcare provider should not be delayed if fever, cough, or congestion develop. The risk of complications is too high. In the past, I haven’t always bothered to call my doctor when I spiked a fever or had bad congestion. This year, I called my doctor the moment my temperature went up, and I was able to get treatment for suspected influenza that helped my recovery. If you get flu-like symptoms, call your doctor right away. Don’t wait and risk developing more severe illness.

#11 Stay informed, but in balance.

Use a reliable source to stay aware of developments in your area. You need to know if there are health advisories or local outbreaks that affect you. Once you have that information, though, stop. Unless you are a virus geek like me, the constant buzz of updates and breaking news may just wind you up. The bad weather analogy may be helpful here. You probably pay different levels of attention to storms that are 1,000 miles from you versus 100 miles versus 10 miles. The risk assessment for a viral outbreak is similar.

There is no way to virus-proof ourselves completely. However, if you follow these common sense public health recommendations, you will be better equipped to handle an infection if it comes. Do what you can to minimize disruptions to your routine. If you do get sick, take it seriously and seek healthcare.

And one last thing: wash your hands. Seriously. Wash your hands.

 

Public Health Wales: Latest information on Novel Coronavirus (COVID-19)

Public Health Wales statement on Novel Coronavirus (COVID-19) outbreak (updated daily)

NHS: Coronavirus (COVID-19)

NHS Wales: Coronavirus symptom checker

MEA: Coronavirus infection and ME/CFS, by Dr Charles Shepherd  9 March update

The environmental medicine approach from Dr Myhill: Coronavirus – it is not a death sentence! What do you need to do for viral survival

UK Government: Coronavirus action plan

25 % Group: Coronavirus & ME, by Dr Nigel Speight

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Cell-based blood biomarkers for ME/CFS

Posted on 03/01/2020 by wames

Cell-based blood biomarkers for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Daniel Missailidis, Oana Sanislav, Claire Y Allan, Sarah J Annesley, Paul R Fisher in Int. J. Mol. Sci. 2020, 21(3), 1142; [doi.org/10.3390/ijms21031142]

 

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating illness whose biomedical basis is now beginning to be elucidated. We reported previously that, after recovery from frozen storage, lymphocytes (peripheral blood monocytic cells, PBMCs) from ME/CFS patients die faster in culture medium than those from healthy controls.

We also found that lymphoblastoid cell lines (lymphoblasts) derived from these PBMCs exhibit multiple abnormalities in mitochondrial respiratory function and signalling activity by the cellular stress-sensing kinase TORC1. These differences were correlated with disease severity, as measured by the Richardson and Lidbury Weighted Standing Test.

The clarity of the differences between these cells derived from ME/CFS patient blood and those from healthy controls suggested that they may provide useful biomarkers for ME/CFS.

Here we report a preliminary investigation into that possibility using a variety of analytical classification tools, including linear discriminant analysis, logistic regression and Receiver Operating Characteristic (ROC) curve analysis. We found that results from three different tests, lymphocyte death rate, mitochondrial respiratory function and TORC1 activity could each individually serve as biomarker with better than 90% sensitivity but only modest specificity vis a vis healthy controls.

However, in combination they provided a cell-based biomarker with sensitivity and specificity approaching 100% in our sample. This level of sensitivity and specificity was almost equalled by a suggested protocol in which the frozen lymphocyte death rate was used as a highly sensitive test to triage positive samples to the more time consuming and expensive tests measuring lymphoblast respiratory function and TORC1 activity. This protocol provides a promising biomarker that could assist in more rapid and accurate diagnosis of ME/CFS.

 

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Associations of occupational stress, workplace violence & organizational support on chronic fatigue symptoms among nurses

Posted on 02/27/2020 by wames

Associations of occupational stress, workplace violence and organizational support on chronic fatigue symptoms among nurses, by Dr Mengyao Li, Dr Qianyi Shu, Dr Hao Huang, Dr Wen Bo, Dr Lulu Wang, Dr Hui Wu in Jan 14312 03 February 2020[https://doi.org/10.1111/jan.14312]

 

Research abstract:

Aims:
Chronic fatigue syndrome is an agnogenic disease worldwide. Nurses are at a high risk of chronic fatigue syndrome. However, no research has been done to examine the associations of workplace violence, organizational support and occupational stress with chronic fatigue syndrome among Chinese nurses. This study aimed to examine effects of these factors on chronic fatigue syndrome in this occupational group.

Design:
Cross‐sectional. All participants voluntarily completed a questionnaire survey.

Methods:
The study was conducted in Liaoning province from December 2017 to January 2018. Self‐administered questionnaires were distributed to 1200 nurses, including Effort‐Reward‐Imbalance, Workplace Violence Scale, Survey of Perceived Organizational Support, together with age, gender, marital status, education levels, physical activities, job rank, monthly income and weekly working hours. Complete responses were obtained from 1080 (90%) participants. Chronic fatigue syndrome was diagnosed by doctors according to the Centers for Disease Control and Prevention criteria. Multivariable logistic regression was performed to examine these independent risk factors.

Results:
The prevalence of chronic fatigue syndrome was 6.76%. The results of logistic regression analysis showed that nurses who experienced serious higher levels of overcommitment, workplace violence and less organizational support were more likely to be classified as chronic fatigue syndrome.

Conclusion:
There was a high prevalence of chronic fatigue syndrome. Lower workplace violence, more organizational support and lower overcommitment could be effective resources for reducing chronic fatigue syndrome.

Impact:
Workplace violence, organizational support and occupational stress were related to chronic fatigue syndrome, which helped to explain why Chinese nurses suffered higher prevalance of chronic fatigue syndrome. Overcommitment explained chronic fatigue syndrome better than Effort/Reward Ratio, so intrinsic stress played a more critical role than extrinsic stress in chronic fatigue syndrome. Chinese nurses suffered serious sleep disorders and impairment of concentration and memory. These symptoms might also attributed to serious occupational stress, unsafe and unsupportive working environment. Creating a safe and supportive working environment, relieving intrinsic occupational stress should be considered as an institutional strategy to early prevent chronic fatigue syndrome.

Read full paper

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Carnitine conjugation profiling in a selected cohort of patients with CFS

Posted on 02/26/2020 by wames

Carnitine conjugation profiling in a selected cohort of patients with CFS, by L Du Plessis. MSc BioChem Dissertation 2019, North West University, South Africa.  21648859

 

Research abstract:

Chronic fatigue syndrome (CFS) is classified by the World Health Organisation (WHO) as a non-communicable disease. Fatigue is a symptom commonly experienced by many individuals and is also a symptom associated with a wide variety of diseases, but once this fatigue becomes long lasting, persistent and debilitating, a case of CFS is considered.

Research of CFS dates back to the nineteen hundreds, but unfortunately, no definite underlying cause or one single positive treatment has been identified. Diagnosis also poses a difficult task due to different criteria available, but also because of the lack in confidence of diagnosing doctors in making a positive diagnosis, because this disease is still poorly understood.

Recent studies and research found promising evidence that mitochondrial dysfunction may be considered as a possible underlying cause of CFS. Because mitochondria are responsible for the release of energy in cells, the connection between mitochondrial dysfunction and the underlying energy deficiency in CFS patients may indicate a good starting point for further investigation. L-carnitine plays an important role in energy metabolism and could possibly be used as potential biomarkers for energy related diseases such as CFS.

The first part of the study focused on method development and validation. A pre-existing high performance liquid chromatography tandem mass spectrometry (HPLC-MS/MS) method coupled with electrospray ionisation (ESI) was further developed and validated to simultaneously quantify

The second part of the study included application of the developed and validated method to urine samples of controls and possible CFS patients. All carnitines of interest could be detected and identified with this method, although the longer chain aclylcarnitines posed some difficulty. The aim of this study was to identify altered acylcarnitine profiles associated with possible CFS patients compared to control samples. At the end, principal component analysis (PCA) statistical analysis could not differentiate between the two groups, but two acylcarnitines were identified by the Mann Whitney test to have significant p-values, namely octanoylcarnitine (C8) and decanoylcarnitine (C10).

Although the method can be applied for acylcarnitine identification in urine samples, it is advised to pay attention to detecting the long chain acylcarnitines more efficiently in order to get the whole profile for comparison.

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A critical review to investigate CFS as Sleep Disorder

Posted on 02/25/2020 by wames

A critical review to investigate Chronic Fatigue Syndrome as Sleep Disorder
Aman Gupta, Ramesh C Deka and Shruti Gupta in EC Neurology 12:1 (2020): 01-10

 

Review abstract:

Introduction: Chronic fatigue syndrome is associated with marked fatigue and sleep disturbance specifically the non-restorative sleep. This has led to a though process among the Scientists to rule out possibility of association of CFS with Sleep Disorders. Researchers have tried to investigate the causal relationship between the two by virtue of multiple experiments, however consensus on the same still lacks.

Methods and Results: In current review, critical analysis of individual studies was conducted evaluating credibility of experiments leading to a final opinion pertaining to Chronic Fatigue Syndrome association with Sleep Pathology. Possible overlaps among different mechanisms were also identified to provide robust conclusion.

Conclusion: Current review suggests that Chronic Fatigue Syndrome and Sleep Disorders can be more of comorbid rather than having a causal relationship. Hence there is a mix type of evidence which tries to build relationship between the two but definite conclusion clearly demonstrating CFS as a sleep disorder cannot be reached.

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Biomedical insights that inform the diagnosis of ME/CFS

Posted on 02/24/2020 by wames

Biomedical insights that inform the diagnosis of ME/CFS, by Brett A Lidbury, & Paul R Fisher, in Diagnostics 2020, 10(2), 92; [doi.org/10.3390/diagnostics10020092] (This article belongs to the Special Issue Biomedical Insights that Inform the Diagnosis of ME/CFS)

 

Editorial announcing the publication of a new book:

Prof Brett A Lidbury

It is well known that myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS), whether considered as separate diseases or as the one chronic syndrome, continue to generate debate. Discussions on language, definitions and theoretical parameters continue, but whatever your position, one can now agree that ME and/or CFS (referred to hereafter as ME/CFS) is a disease with a physiological basis, rooted in biochemical and molecular dysfunction in the cells of sick individuals, and not attitudes that can be alleviated by psychological therapies. As a result, biomedical imperatives must now become the focus of research enquiry in order to find clinically translatable answers as soon as possible.

Prof Paul R Fisher

 

This book is intended as a landmark volume to mark this shift in thinking and to consolidate recent fundamental discoveries and biomedical insights as pathways towards tangible diagnostics, and eventual ME/CFS treatments.

Australian researchers, with their collaborators locally and abroad, have been at the forefront of discovery in the biomedical realm, and this book draws together fundamental and applied insights that have emerged from scientific and clinical enquiry.

The consolidation of up-to-date insights into ME/CFS was catalysed by a conference (https://www.emerge.org.au/symposium#.XbIv2iVS-3c) in March 2019 (Geelong, Australia), hosted by Emerge Australia, and several chapters in this volume are based on presentations from this meeting.

Section I—Reviews, Commentaries and Opinions

Section II—Research Results—Biomedical Insights and Diagnostics

Read full editorial – a pdf

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IgG stimulated β2 adrenergic receptor activation is attenuated in patients with ME/CFS

Posted on 02/24/2020 by wames

IgG stimulated β2 adrenergic receptor activation is attenuated in patients with ME/CFS, by Jelka Hartwig, Franziska Sotzny, Sandra Bauer, Harald Heidecke, Gabriela Riemekasten, Duska Dragund, Christian Meisel, Claudia Dames, Patricia Grabowski, Carmen Scheibenbogen in Brain, Behavior, & Immunity – Health, 5 February 2020, [doi.org/10.1016/j.bbih.2020.100047]

Highlights:

  • IgG physiologically stimulates β2 AdR signaling.
  • β2 AdR activation by IgG is attenuated in ME/CFS patients.
  • First evidence that IgG from ME/CFS patients differentially modulates β2 AdR ligand signaling.

Abstract:

β2 AdR

Background:
There is emerging evidence of a network of natural autoantibodies against GPCR which is dysregulated in various diseases. β2 adrenergic and M3 and M4 cholinergic receptor (β2 AdR and M3/4 mAChR) antibodies were found to be elevated in a subset of ME/CFS patients.

Methods:
We comparatively analyzed the effects of polyclonal IgG on β2 AdR signaling and immune cell function in vitro. 16 IgG fractions were isolated from serum of 5 ME/CFS patients with elevated (CFS AABhigh) and 5 with normal levels (CFS AABnorm) of β2 AdR autoantibodies, and from 6 healthy controls (HC). The effect of each IgG on β-arrestin recruitment and cAMP production in β2 AdR and M3/4R reporter cell lines was studied. Further effect of each IgG on human monocyte cytokine production and on T cell proliferation in vitro was analyzed. In addition, studies on cytokine production in β2 AdR wild type and knockout mice splenocytes incubated with IgG fractions were performed.

Results:
We found that IgGs from HC could stimulate β-arrestin recruitment and cAMP production in β2 AdR reporter cell lines whereas IgGs from CFS AABhigh had no effect. The IgG-mediated activation of β2 AdR was confirmed in β2 AdR wt and ko mice. In accordance with previous studies IgG fractions from HC inhibited LPS-induced TNFα and stimulated LPS-induced IL-10 production of monocytes.

Further IgG fractions from HC enhanced proliferation of T-cells stimulated with anti-CD3/CD28. IgG fractions from CFS AABhigh patients had no significant effect on both cytokine production and T cell proliferation, while IgGs from CFS AABnorm had an intermediate effect. We could also observe that IgG can modulate the signaling of β2 AdR ligands isoprenline and propranolol.

Conclusions:
We provide evidence that IgG can activate β2 AdR. The β2 AdR activation by IgG is attenuated in ME/CFS patients. A dysregulation of β2 AdR function could explain many symptoms of ME/CFS.

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Investigation into cognitive behavioural therapy for CFS/ME

Posted on 02/20/2020 by wames

Investigation into cognitive behavioural therapy for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis, by Catherine E Clark . DClinPsych Thesis, Canterbury Christ Church, April 2019

 

Thesis abstract:

Background:

In the UK, CBT is currently recommended as an intervention for CFS/ME. Physical and psychological outcomes of CBT for CFS/ME vary across studies, as does the CBT model adopted. There is some evidence to suggest that some participants experience improved psychological and physical outcomes post CBT. However, the specific nature of these changes and the factors facilitating them is not well understood. This was therefore the focus of the current study.

Methodology:

Semi-structured interviews were conducted with 13 service users who had engaged in CBT aimed at improved management of their condition. Interviews were analysed using a grounded theory methodology, in order to build a theory of participants’ experiences.

Results:

The theory suggests that CBT led to participants feeling more able to cope with CFS/ME. This was due to both a shift in perspective arising from the therapy room and taking a more adaptive approach to daily life. The theory also suggested that participants experienced increased acceptance of the condition, which facilitated further adaptive changes.

Discussion:

Findings extend existing literature in suggesting that CBT aimed to improve management of CFS/ME may result in improved coping and reduced distress, independently of changes in fatigue. Clinical and research implications are discussed.

Thesis summary:

Section A is a systematic review exploring service users’ and their families’ experiences of psycho-social interventions for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). A thematic analysis was completed on the qualitative literature to explore the experience of interventions, the intervention components perceived as helpful and unhelpful and facilitators and barriers to benefitting from interventions. Resulting themes are discussed and study methodologies critiqued. Clinical and research implications are discussed.

Section B presents the results of a grounded theory study of cognitive behavioural therapy (CBT) for CFS/ME, specifically focused on the changes experienced by service users and the therapy components and conditions perceived to facilitate these. Semi-structured interviews were conducted with 13 service users recruited via a specialist CFS/ME service.

In contrast to the NICE guidelines, the model of CBT delivered in this service was not one of ‘reconditioning’ in which service users are supported to increase their activity; instead the goal was better adjustment to CFS/ME to improve quality of life. A theorised model of the therapeutic process is discussed, in which CBT led to participants feeling more able to cope with CFS/ME and experience increased acceptance of the condition. Clinical and research implications are discussed.

Read full thesis

 

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