EPP self-management courses in North Wales, Jun-July 2019

Chronic Disease Self Management Programme

The CDSMP is an EPP Cymru course to help people who live with a long term health condition to maintain and improve their quality of life through self-management.

What does the course involve?

Six weekly sessions, each lasting two and a half hours (including breaks and refreshments). They are very varied. There are brief talks, discussions and freethinking sessions.

The course is about learning important general skills, not specific to any one condition, including:

  • managing your symptoms
  • dealing with stress
  • depression and low self-image
  • managing pain
  • developing coping skills
  • learning ways to relax and eating healthily
  • working more closely with those caring for you
  • planning for the future.

Book your place in advance as spaces fill up quickly.

Venue                                    Day              Start date         End date        Start           End

To book a place on one of the above courses, please contact the Self Care Office:

More information about Health & Well being courses from the Betsi Cadwaladr University Health Board website  or EPP Cymru.

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is relevant for you and you are well enough to cope.

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Decreased expression of the CD57 molecule in T Lymphocytes of patients with CFS

Decreased Expression of the CD57 Molecule in T Lymphocytes of Patients with Chronic Fatigue Syndrome, by P Espinosa, J M Urra in  Mol Neurobiol (2019) [Online: 21 March 2019]

Research abstract:
The chronic fatigue syndrome (CFS) is characterized by a prolonged incapacitating fatigue, headaches, sleep disturbances, and decreases in cognition, besides alterations in other physiological functions.

At present, no specific biological markers have been described in this pathology. In the present study, we analyzed in lymphocytes the CD57 expression for the diagnosis of CFS, evaluating both the percentage of blood lymphocytes expressing CD57 and the average amount of the molecule expressed per cell.

The study demonstrated a marked and significant decrease in the expression of CD57 in lymphocytes of CFS patients regarding healthy controls. In T lymphocytes, the decrease was significant both in the percentage of cells expressing CD57 (7.5 ± 1.2 vs 13.3 ± 1.6, p = 0.024) and in a more relevant way in the amount of CD57 molecule expressed per cell (331 ± 59 vs 1003 ± 104, p ≤ 0.0001). In non-T lymphocytes, the decrease was significant only in the amount of CD57 expressed per cell (379 ± 114 vs 691 ± 95, p = 0.007).

The study of CD57 antigen in blood lymphocytes is a useful marker that could cooperate in the diagnosis of CFS patients. Its decrease in T lymphocytes provides most valuable results than the results in other lymphocyte subpopulations.

Read full paper

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Challenging claims that fearful avoidance beliefs about activity in ME & CFS can be targeted with CBT/GET.

Cognitive-behavorial and graded exercise therapies for chronic fatigue (syndrome) are associated with lower levels of work/school attendance, by Frank N M Twisk in J Behav Med [Published online 28 March 2019]

Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: a preliminary mixed-methods study, Sheila Ali, Lucy Adamczyk, Mary Burgess, Trudie Chalder in Journal of Behavioral Medicine pp 1–13 [First Online: 25 January 2019]

Twisk comments on the recent study by Ali and colleagues which reported that stronger fear avoidance beliefs at baseline were associated with higher fatigue approximately 5 months later (T2) and worse social adjustment at T1 and T2, and female gender and treatment were associated with lower work/school attendance at T1 and T2.

Ali et al. conclude: ‘‘Fearful beliefs about activity could be targeted using cognitive-behavioural interventions’’.

Twisk makes 3 challenges to the study results:

  1. the patients investigated cannot be qualified as CFS patients, let alone ME patients – the discredited Oxford criteria was used for selection
  2. The results do not support the claim that CBT & GET are effective rehabilitative treatments as in most cases (25/41) treatment was associated with lower work/school attendance at baseline and after 5 months.
  3. In spite of claiming their study ‘‘did not allow for causal inferences to be made’ they conclude that fearful beliefs could have ‘‘developed as a result of being so severely ill’’

Twisk believes the study actually shows that there is a need for accurate diagnosis (ME, CFS or CF) and that CBT and GET are neither effective nor safe.

Read the full article

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CBT & GET are ‘unsuitable treatments or management approaches for ME/CFS’

The results of the Forward ME and Oxford Brookes University patient survey on CBT and GET in ME/CFS have been published.

2,274 people with ME/CFS of all ages responded to the online survey with their experiences of cognitive behavioural therapy and/or graded exercise therapy. 80.4% were female and 98.5% said they experience post-exertional malaise.

Conclusions from Forward ME Executive Summary:

The results show clearly that cognitive behavioural therapy and graded exercise therapy are unsuitable treatments or management approaches for ME/CFS. The changes in severity and the worsening of symptoms are clear indications that the therapies being offered are having adverse effects on the health of individuals.

CBT, while may be effective for a minority in helping with mental health challenges such as depression or anxiety, is shown to be ineffective in a considerable proportion of people and even led to almost half of respondents reporting worse symptoms.

GET is shown to cause considerable deterioration in physical and mental health. It has led to people becoming more severe and the open questions have given us insight into the worsening symptoms that have developed when patients have increased their activity beyond their capabilities.

The results show that although NICE might not recommend GET for the severely affected, they are clearly being given GET at the clinical level. This could be because clinics are not tailoring their management advice to the individual (as NICE recommends) or are simply not aware of the unsuitability of aerobic/exercise for people with ME/CFS.

Alongside this the analysis of the survey provided by Oxford Brookes University show that people with ME/CFS have experienced negative effects with regard to welfare and benefits when choosing whether or not participate in these treatments. Results also show that the adverse effects of the treatment has had a considerable impact on the employment and education capabilities of individuals.

We acknowledge that there may be some bias in the results of the survey due to the promotion of the survey being organised by ME charities rather than NHS organisations. There are also limitations in self-reported data. However, we feel the scale of the response demonstrates the strength of feeling and harm on this issue.

As there is a commitment that this new guideline be ‘patient led’ we believe that the responses should carry considerable weight in the consideration of effective treatment or management approaches. There is also an ethical question[1] whether the current management recommendations relating to CBT and GET can continue while the development is underway when their suitability is evident.

Our collective recommendation is that GET and CBT be removed from the NICE guideline for ME/CFS.

Read more about the survey results on the ME Association website: Forward ME and Oxford Brookes University announce results of patient survey on CBT and GET in ME/CFS

#MEAction: GET and CBT are not safe for ME – summary of survey results

Full report     Survey appendices

ME Research UK: Forward-ME survey on patients’ experiences of CBT and GET

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Amazon Smile gives free donations to the charity of your choice

You shop. Amazon gives, with a smile.

Amazon will donate 0.5% of the net purchase price of eligible purchases to the charitable organisation of your choice.

Choose WAMES!

AmazonSmile is the same Amazon you know. Same products, same prices, same service.

Shop or browse as normal and select WAMES when asked

Or go directly to support WAMES

Choose WAMES now and help keep WAMES on the campaign trail!

 

NB  Curiously, Instant video downloads and Amazon devices earn 1.5% when purchased through Easyfundraising, more than Amazon Smile is offering!

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Survey about ME triggers – take part in a university research project

Triggers & causes of ME & CFS Research project

You are invited to take part in a research project looking into physiological and biomedical triggers and causes of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).

The researcher is a 3rd year student of Human Biology at Worcester University (and Welsh resident). The survey is part of her dissertation and she hopes it will shape future research and lead to a better understanding of ME/CFS.

Participants:

  • should have or have had ME/CFS   OR
  • can be a parent or carer for someone with ME/CFS
  • do not need to know what triggered their illness

The questionnaire:

  • is online
  • will take about 15 minutes to complete, but there is a 3 minute version if you are energy poor
  • all responses are anonymous, and no identifying data is requested
  • a hard copy or other alternative can be made available if required. Please contact me.cfs.survey@gmail.com

Closing date is 28th April 2019

Please share your experiences with the researcher and pass this information on so others can take part.

ME CFS Survey

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B-Lymphocyte depletion in patients with ME/CFS: the final rituximab trial results

B-lymphocyte depletion in patients With Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: a randomized, double-blind, placebo-controlled trial

by Oystein Fluge, Ingrid G. Rekeland, Katarina Lien, Hanne Thurmer, Petter C. Borchgrevink, Christoph Schafer, Kari Sorland, Jorg Assmus, Irini Ktoridou-Valen, Ingrid Herder, Merethe E. Gotaas, Oivind Kvammen, Katarzyna A. Baranowska, Louis M.L.J. Bohnen, Sissel S. Martinsen, Ann E. Lonar, Ann-Elise H. Solvang, Arne E.S. Gya, Ove Bruland, Kristin Risa, Kine Alme, Olav Dahl, Olav Mella in Annals of Internal Medicine [Preprint April 2, 2019]

Research abstract:

Background:
Previous phase 2 trials indicated benefit from B-lymphocyte depletion in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Objective:
To evaluate the effect of the monoclonal anti-CD20 antibody rituximab versus placebo in patients with ME/CFS.

Design:
Randomized, placebo-controlled, double-blind, multicenter trial. (ClinicalTrials.gov: NCT02229942)

Setting:
4 university hospitals and 1 general hospital in Norway.

Patients:
151 patients aged 18 to 65 years who had ME/CFS according to Canadian consensus criteria and had had the disease for 2 to 15 years.

Intervention:
Treatment induction with 2 infusions of rituximab, 500 mg/m2 of body surface area, 2 weeks apart, followed by 4 maintenance infusions with a fixed dose of 500 mg at 3, 6, 9, and 12 months (n = 77), or placebo (n =
74).

Measurements:
Primary outcomes were overall response rate (fatigue score ≥4.5 for ≥8 consecutive weeks) and repeated measurements of fatigue score over 24 months. Secondary outcomes included repeated measurements of self-reported function over 24 months, components of the Short Form-36 Health Survey and Fatigue Severity Scale over 24 months, and changes
from baseline to 18 months in these measures and physical activity level. Between-group differences in outcome measures over time were assessed by general linear models for repeated measures.

Results:
Overall response rates were 35.1% in the placebo group and 26.0% in the rituximab group (difference, 9.2 percentage points [95% CI, −5.5 to 23.3 percentage points]; P = 0.22). The treatment groups did not differ in fatigue score over 24 months (difference in average score, 0.02 [CI, −0.27 to 0.31]; P = 0.80) or any of the secondary end points. Twenty patients (26.0%) in the rituximab group and 14 (18.9%) in the placebo group had serious adverse events.

Limitation:
Self-reported primary outcome measures and possible recall bias.

Conclusion:
B-cell depletion using several infusions of rituximab over 12 months was not associated with clinical improvement in patients with ME/CFS.

Comments:

Annals of Internal medicine – summaries for patients: Rituximab for Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 

The researchers noticed that a few patients with ME/CFS who later developed cancer had improvement of their ME/CFS symptoms when they received cancer treatments. One of these treatments included rituximab, a drug that is often used to treat inflammatory diseases (for example, rheumatoid arthritis) and lymphoma. They did a few small trials that also suggested that rituximab might be a beneficial treatment of ME/CFS.

Annals of Internal Medicine editorial: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Trial Fails to Confirm Earlier Observations of Rituximab’s Effectiveness, by Peter C. Rowe, MD    [Behind paywall]

Kavli Trust: No effect of rituximab treatment in patients with ME/CFS

The researchers comment:

The study provides valuable information on the symptom course of ME/CFS patients during two years close follow-up in a clinical trial. A subgroup of patients experienced symptom improvement during the observation period. It is difficult to say whether this is the natural course of the disease, or whether other mechanisms such as placebo effects due to high expectations, come into play…

Although side effects were reported by patients who received both the study medication and placebo, the participants generally tolerated the medication well. Many symptoms that were reported as possible side effects, could also be interpreted as fluctuations in the ME/CFS symptoms. Among the 15 patients who reported a general worsening of their symptoms over time, more patients had received placebo than rituximab.

EurekAlert: In phase 3 trial, rituximab not associated with clinical
improvement in patients with ME/CFS

The author of an accompanying editorial from Johns Hopkins University School of Medicine [Peter C. Rowe, MD] praises the sound methodology and sophistication of the trial and notes that a substantial challenge in ME/CFS research is the heterogeneity of the illness. For this reason, future research should be stratified by disease duration and may need to exclude or accommodate for specific subgroups, such as those who are unlikely to respond to treatment and those with a current flare during the trial period.

Medpage Today: Rituximab Fails in Chronic Fatigue

Potential explanations for the discrepancy in results in this trial and the earlier studies included high placebo responses, uncertainty over ME/CFS symptom fluctuations over time, and possible patient selection bias.

The lack of significant improvements with B-cell depletion in this study ‘weakens the case for an important role of B lymphocytes in ME/CFS but does not exclude an immunological basis,’ Fluge’s group noted.

‘The profound level of impaired function of affected individuals warrants a new commitment to hypothesis-driven clinical trials that incorporate and expand on the methodological sophistication of the rituximab trial,’ Rowe stated in his editorial.

Limitations of the study, the researchers said, included self-referral and self-reported outcome measures.

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ACTivate your life well-being course begins 5 Apr 2019, Port Talbot

ACTivate your life course

The course is based on Acceptance and Commitment Therapy which teaches people how to reduce their suffering and how to lead a richer, more fulfilling life by accepting the things they cannot control and making a commitment to do the things that they really care about.

We all experience suffering, pain and distress at some point in our lives, whether this be psychological or physical, so anyone and everyone is welcome to attend.

The course is run weekly over four sessions for approximately 2 hours with a break halfway through the session.

The four sessions:

  • ACT 1- You are not your mind
  • ACT 2- Facing up to your life
  • ACT 3- Being mindful
  • ACT 4- Living wisely, living well

Neath Port Talbot

  • Venue: St Paul’s Centre, Gerald Street, Port Talbot, SA12 6DQ
  • Room: Main Hall
  • Friday 5th April – 3 May 2019    10-12 am

The courses and workshops are free, self-referral and open access, so there is no need to book on or register, simply choose what you feel is the most suitable for you and turn up; feel free to bring someone along and spread the word. There is no attendance register, but it is recommended that you attend all of the sessions to get the most out of it, although you can always switch between courses to fit in with your commitments.

For more information contact the Living Life Well programme at Abertawe Bro Morgannwg Health Board.       07967612246      living.lifewell@wales.nhs.uk

Self help material can be used to improve feelings of stress, low mood, anxiety and other wellbeing difficulties.

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to attend.

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Increased risk of CFS in patients with inflammatory bowel disease

Increased risk of CFS in patients with inflammatory bowel disease: a population-based retrospective cohort study, by Shin-Yi Tsai, Hsuan-Ju Chen, Chon-Fu Lio, Chien-Feng Kuo, An-Chun Kao, Wei-Shieng Wang, Wei-Cheng Yao, Chi Chen and Tse-Yen Yang in Journal of Translational Medicine 2019 17:55 [Published: 22 February 2019]

 

Research abstract:

Background:
Similarities in the symptoms of chronic fatigue syndrome (CFS) and inflammatory bowel disease (IBD) have been observed as follows: severe disease activity in IBD correlates with severe fatigue, major psychiatric signs, the common use of medication, and bacterial translocation. One of several hypotheses for explaining the mechanisms underlying CFS suggests a similarity to the impaired intestinal mucosa of IBD. “This study investigated the risk of incident CFS among patients with IBD”.

Methods:
We conducted a population-based retrospective cohort study by using Taiwan’s National Health Insurance Research Database to evaluate the subsequent risk of CFS in patients with IBD, according to demographic characteristics and comorbidities. The exposure cohort comprised 2163 patients with new diagnoses of IBD. Each patient was randomly selected and frequency matching according to gender and age with four participants from the general population who had no history of CFS at the index date (control cohort). Cox proportional hazards regression analysis was conducted to estimate the relationship between IBD and the subsequent risk of CFS.

Results:
The exposure cohort had a significantly higher overall risk of subsequent CFS than that of the control group [adjusted hazard ratio (Christophi in Inflamm Bowel Dis 18(12):2342–2356, 2012) = 2.25, 95%, confidence interval (Aaron and Buchwald in Ann Intern Med 134(9 Pt 2):868–881, 2001; Farraye et al. in Am J Gastroenterol 112:241, 2017) 1.70–2.99]. Further analysis indicated a significantly higher risk of CFS in patients who were male (HR = 3.23, 95% CI 2.12–4.91), were older than 35 years, and had IBD but without comorbidity status, e.g. Cancers, diabetes, obesity, depression, anxiety, sleep disorder, renal disease (HR = 2.50, 95% CI 1.63–3.84) after adjustment.

Conclusion:
The findings from this population-based retrospective cohort study suggest that IBD, especially Crohn’s disease, is associated with an increased risk of subsequent CFS.

 

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Stress management course begins Neath, 4 Apr 2019

The Stress Control course

The Stress Control course helps people to understand how stress and associated problems such as low mood, anxiety, panic and sleep affect them. The aim of the course is to help turn you into your own therapist; you are the expert on you, but the course is here to guide you in improving your understanding and management of stress.

The course is based on Cognitive Behavioural Therapy which looks at the connection between thoughts, feelings, bodily sensations and behaviours to help people discover what may be maintaining their stress and learn ways to manage it more effectively.

 

The course is run weekly over six sessions for approximately 90 minutes with a break halfway through the session.

The six sessions:

  1. What is stress? The first steps
  2. Controlling your body
  3. Controlling your thoughts
  4. Controlling your actions
  5. Controlling panic feelings and medication
  6. Controlling your sleep, wellbeing and controlling your future

Neath

  • Tonna Hospital, Pant-y-Coed cafe, Tonna, Neath SA11 3LX
  • Room: Cafe
  • Thursday 4 April – 9 May 2019    9.30- 11 am

You can turn up and register on the day of the course and bring a friend. Free course materials and relaxation CD will be available.

Stress Control is run as part of the Abertawe Bro Morgannwg Health Board Living Life Well Programme.

For more information contact the team: 07967 612246  living.lifewell@wales.nhs.uk

 

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