Dr Sarah Myhill will be interviewed by Theo Chalmers on Sky Channel 200 Tues 13th March, starting at 8 pm. Questions for Dr Myhill are very welcome! Details of the broadcast below as given by Theo Chalmers:

“It’s a two hour show with two short breaks in each hour (so three sections per hour) and people texting in (from within UK send the word ‘beyond’ {without the quotemarks}, then a space, then the message to 86686 – Standard charges apply).

The first hour is live on Sky Channel 200 (or manual tune on Freesat); the second hour is for subscribers worldwide on the internet.”  The address for subscriptions to view the second hour of the interview is www.edgemediatv.com

Research from Florida, USA:

OBJECTIVES: Stressors and emotional distress responses impact chronic fatigue syndrome (CFS) symptoms, including fatigue. Having better stress management skills might mitigate fatigue by decreasing emotional distress. Because CFS patients comprise a heterogeneous population, we hypothesized that the role of stress management skills in decreasing fatigue may be most pronounced in the subgroup manifesting the greatest neuroimmune dysfunction.

METHODS: In total, 117 individuals with CFS provided blood and saliva samples, and self-report measures of emotional distress, perceived stress management skills (PSMS), and fatigue. Plasma interleukin-1-beta (IL-1β, IL-2, IL-6, IL-10, and tumor necrosis factor-alpha (TNF-α), and diurnal salivary cortisol were analyzed.

We examined relations among PSMS, emotional distress, and fatigue in CFS patients who did and did not evidence neuroimmune abnormalities.

RESULTS: Having greater PSMS related to less fatigue (p=.019) and emotional distress (p<.001), greater diurnal cortisol slope (p=.023) and lower IL-2 levels (p=.043).

PSMS and emotional distress related to fatigue levels most strongly in CFS patients in the top tercile of IL-6, and emotional distress mediated the relationship between PSMS and fatigue most strongly in patients with the greatest circulating levels of IL-6 and a greater inflammatory (IL-6):anti-inflammatory (IL-10) cytokine ratio.

DISCUSSION:  CFS patients having greater PSMS show less emotional distress and fatigue, and the influence of stress management skills on distress and fatigue appear greatest among patients who have elevated IL-6 levels.

These findings support the need for research examining the impact of stress management interventions in subgroups of CFS patients showing neuroimmune dysfunction.

Stress management skills, neuroimmune processes and fatigue levels in persons with chronic fatigue syndrome.

There is a need for broad spectrum assays and kits which make it possible to detect  in a simple way and at an early stage whether a patient suffers from a Th1- or a Th2- mediated disease. A Belgian study describes the development of an easy-to-perform self-test principle that uses a redox-active colorimetric substrate producing a clearly visible change of colour upon reaction with metabolites  present at high concentration in the urine of Th2-shifted individuals.

It also allows patients to evaluate their Th1/Th2 balance repeatedly over short periods of time to follow-up the effects of taking pre- and probiotics, neutraceuticals, drugs or any other therapeutic strategy to balance Th1/Th2 status.

The researchers used the test to confirm that CFS/ME is a Th2-mediated illness.

Self-test monitoring of the Th1/Th2 balance in health and disease with special emphasis on CFS/ME

NB  T helper cells (Th cells) are a sub-group of lymphocytes which play an important role in establishing and maximising the capabilities of  the immune system.

Mae Richard Hazlewood, ymgynghorydd arbennig i’r Ysgrifennydd Cymreig, Cheryl Gillan, yn mynd ar reid beics i godi pres at achos da, ar ôl i’w wraig Rachel gael deiagnosis o ME.  Fis Medi nesaf, bydd yn reidio’r 300 milltir rhwng Llundain, Amsterdam a Brwsel i’r ME Association.  Gall pobl gyfrannu i’r her ar lein.

Wales online article

Mae e-lyfr agored i bawb a gyhoeddwyd yn Chwefror 2012 yn cynnwys 5 erthygl. Thema gyffredin rhyngddynt i gyd ydi fod CFS yn afiechyd aml-system gyda’r posibilrwydd o fod â mwy nag un achos ac yn cael ei ddylanwadu gan nifer o ffactorau rhyngweithiol. Ymhellach, maent yn cydnabod realiti CFS i bobl hefo’r afiechyd a phwysigrwydd dod o hyd i’r achosion, triniaethau, ac yn y pen draw, wellhâd. Fel mae technegau ymchwil blaenllaw yn cael eu defnyddio fwyfwy ar gyfer yr astudiaeth o CFS, mae’n debygol mai mater o amser ydyw cyn fydd beio-farciau yn cael eu darganfod, yr achos yn cael ei ddeall, a thriniaethau yn cael eu dyfeisio.

•  Chapter 1 Chronic Fatigue Syndrome and Viral Infections – Frédéric Morinet and Emmanuelle Corruble
• Chapter 2 Gene Expression in Chronic Fatigue Syndrome Ekua W. Brenu et al
• Chapter 3 Integrated Analysis of Gene Expression and Genotype Variation Data for Chronic Fatigue Syndrome – Jungsoo Gim and Taesung Park
• Chapter 4 Corticosteroid-Binding Globulin Gene Mutations and Chronic Fatigue/Pain Syndromes: An Overview of Current Evidence – C. S. Marathe and D. J. Torpy
• Chapter 5 Small Heart as a Constitutive Factor Predisposing to Chronic Fatigue Syndrome – Kunihisa Miwa

 An International Perspective on the Future of Research in Chronic Fatigue Syndrome

As Chronic Fatigue Syndrome has been associated with abnormalities in essential fatty acid metabolism  Spanish researchers investigated the effect of including essential fatty acids in the diet in a group of 20 patients diagnosed with CFS (18 women and 2 men) and 20 aged- sex- diet- low activity- matched controls.

Compared to the controls, CFS patients show a decrease in the proportion of linoleic acidand an increase in that of stearic acid in plasma, however such differences have not been observed in the fatty acid profile of red blood cells. In these cases, no direct relationship has been observed between the dietary intake and fatty acid profile.

Therefore, these results do not support the proposal that long-chain polyunsaturated fatty may contribute to improvement in CFS patients.

Fatty Acid Profile in Plasma and Red Blood Cells in Chronic Fatigue Syndrome Patients

Bydd Cyfarfod Blynyddol WAMES yn cael ei gynnal ddydd Gwener, 9fed o Fawrth 2012 yn Ninas Powys.  Mae’n agored I  bob aelod.  Cysylltwch â Jan os hoffech fynychu.

Patient-Reported Outcome Measures (PROMS) are questionnaires that researchers and clinicians ask patients to complete to assess the value of a treatment. The limitation of these measures were highlighted in 2011 by critics of the PACE trial.

Researchers from England have reviewed CFS/ME-specific,  domain-specific and generic measures used in  the assessment of adults with CFS/ME.

With the exception of the generic SF-36, they found that all measures had mostly limited evidence of measurement and/or practical properties. Patient involvement in their design was poorly reported and often cursory.

They concluded that the quality and acceptability of reviewed PROMs is limited, and recommendations for patient-reported assessment are difficult. Significant methodological and quality issues in PROM development/evaluation were identified by the appraisal framework, which must be addressed in future research. Clear discrepancies exist between what is measured in research and how patients define their experience of CFS/ME. Future PROM development/evaluation must seek to involve patients more collaboratively to measure outcomes of importance using relevant and credible methods of assessment.

Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review.

Chronic fatigue syndrome (CFS) can sometimes lead to an identity crisis so severe it is akin to dying. That’s one message derived from comments made by fourteen people with the condition who were interviewed in-depth by health psychologists in Scotland in 2008.

Using a qualitative technique called interpretative phenomenological analysis (pdf), Adele Dickson and colleagues identified three themes in the accounts of what it is like to live with CFS: “Identity crisis: agency and embodiment”; “Scepticism and the self”; and “Acceptance, adjustment and coping.”

The people with CFS said that the condition has stripped them of their identities and left them feeling detached from their minds and bodies. “The frequent use of the language of bereavement is suggestive of processes of mourning and even perhaps the death of anticipated self,” the researchers said.

Adele Dickson and her co-workers concluded that there was an urgent need for health psychology to respond to the increasing prevalence of chronic health conditions such as CFS in Western Society. Health psychology needs to truly embrace a biopsychosocial model of illness, they said, and to conduct longitudinal qualitative research “to fully understand the processes underlying adaptation to illness.”

‘That was my old life; it’s almost like a past-life now’: Identity crisis, loss and adjustment amongst people living with Chronic Fatigue Syndrome