WAMES fundraising challenge – could you be a regular donor?

Posted on 05/24/2017 by wames

WAMES fundraising challenge – could you be a regular donor?

WAMES needs a sustainable income, one we can rely on long term. Unfortunately nearly everything we do costs money.

Currently we are spending a lot of time applying for grants, but:

  • this means we take time out from campaigning, updating the website,  producing the magazine etc.
  • few funders offer grants for running costs and campaign costs and some only give a proportion of a project’s costs.

Running costs: 20% of WAMES expenditure
Campaign costs: 45% of WAMES expenditure

Could you become a regular donor?

  • by setting up a Direct Debit with your bank – large or small
  • organising a regular fundraising activity
  • donating a percentage of earnings from your hobby e.g. sale of cakes or fudge, greeting cards, plants, babysitting, tutoring
  • raise funds every time you shop by signing up to Easy fundraising http://www.easyfundraising.org.uk/

Find out how to donate

Fundraising ideas

 

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Once again, the PACE authors respond to concerns with empty answers

Posted on 05/23/2017 by wames

Article abstract:

Once again, the PACE authors respond to concerns with empty answers, by David Tuller in Journal of Health Psychology [Published April 27, 2017]

In their response to Geraghty, the PACE investigators state that they have “repeatedly addressed” the various methodological concerns raised about the trial. While this is true, these responses have repeatedly failed to provide satisfactory explanations for the trial’s very serious flaws.

This commentary examines how the current response once again demonstrates the ways in which the investigators avoid acknowledging the obvious problems with PACE and offer non-answers instead—arguments that fall apart quickly under scrutiny.

 

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#HelpNHSbeMEaware challenge is not just for ME Awareness week!

Posted on 05/23/2017 by wames

Thanks to those who have let us know they have been writing to their Health Boards with their experiences of NHS staff who don’t understand ME, and asking for training and awareness sessions for them.

It is not too late if you wish to join in. Help WAMES demonstrate how desperate the need for awareness raising is, so Health Boards see how important it is not to delay the launch of a training programme any longer.

Read about the campaign: ME awareness: join the WAMES Help NHS be ME aware campaign

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WAMES news blog & social media update

Posted on 05/22/2017 by wames

There will be a reduced service on the WAMES news blog and social media between June and August 2017.

WAMES has regretfully had to take this decision due to a reduction in the number of hours work that volunteers can give us over the summer.

Through the blog and social media we aim to keep you up to date with breaking news in the ME world, and also news and events in Wales which are of interest to people with ME, their families and carers. We will endeavour to post key items of interest, whenever we can.

Our website and social media are just some of the ways we work to achieve the purpose of WAMES – to improve the quality of life of people with ME, their families and carers.

Contact Jan if you would like to join WAMES as a digital volunteer. jan@wames.org.uk

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PACE-GATE: An alternative view on a study with a poor trial protocol

Posted on 05/22/2017 by wames

Article abstract:

PACE-GATE: An alternative view on a study with a poor trial protocol by Bart Stouten in Journal of Health Psychology [Published 12 May 2017]

The controversies surrounding the effectiveness of cognitive behavioural therapy and graded exercise therapy for chronic fatigue syndrome are explained using Cohen’s d effect sizes rather than arbitrary thresholds for ‘success’.

This article shows that the treatment effects vanish when switching to objective outcomes. The preference for subjective outcomes by the PACE trial team leads to false hope. This article provides a more realistic view, which will help patients and their doctors to evaluate the pros and cons.

Extract from conclusion:

Conclusion: where to go from here?

The results above lead me to conclude that White et al. systematically overestimate the effectiveness of CBT because they focus on subjective rather than objective outcomes.

Their vigorous defence of their findings gives me the impression that they are not open to constructive criticism. This understanding is strengthened by their statement that Geraghty misunderstands and misrepresents their work, without providing sound evidence. I would appreciate a more constructive debate, where they attempt to understand why others do not share their views, and subsequently advance findings in this field in a more scientific way.

Given the evidence that the objective improvements reported for CBT and GET are at most modest, I agree with Geraghty that these should be downgraded to adjunct support-level status.

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Mast Cell Activation Disorder & ME/CFS

Posted on 05/18/2017 by wames

Notes on Mast Cell Activation Disorder and ME/CFS, by Margaret Williams, 14 April 2017

Few would dispute that the immunology of ME/CFS is complex and that the findings presented in the literature sometimes appear to be inconsistent.

Whilst much has been published about one sub-group of ME/CFS patients with a low T4 (CD4/helper cell) and a high T8 (CD8/suppressor cell) ratio, not as much seems to have been published about people with ME/CFS who have the opposite T-cell ratio (ie. a high T-cell helper/low suppressor T-cell ratio).

Such an increased T4:T8 ratio resulting in a relative suppressor cell lymphopenia is seen in people with allergies and hypersensitivities, both of which are recognised components of well-defined ME/CFS as distinct from other syndromes of chronic fatigue.

What are Tcells?

It has long been acknowledged that a reduction in functional activity of suppressor Tcells and the loss of suppressor cell influence is implicated in the pathogenesis of autoimmune diseases (1,2,3,4) and evidence is now accumulating in the literature that ME/CFS is an autoimmune disease.

It has also been suggested that there may be an association between ME/CFS and mast cell activation disorder (5).

Evidence has certainly been presented for a causal involvement of pathologically active mast cells in interstitial cystitis, fibromyalgia and irritable bowel syndrome (6) and a link is suggested with POTS and dysautonomia (7), all of which are frequent comorbidities with ME/CFS.

Mast cell activation disorder (MCAD) can cause tremendous suffering and disability: there is no cure for it and management is directed towards symptom control.  Read the full article

Health rising blog post: Mast Cell Activation Disease – The Modern Epidemics of Chronic illness – Afrin: A Book Review by Remy

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Health care use by patients before & after a diagnosis of CFS/ME

Posted on 05/17/2017 by wames

Research abstract:

Health care resource use by patients before and after a diagnosis of chronic fatigue syndrome (CFS/ME): a clinical practice research datalink study, by Simon M. Collin, Inger J. Bakken, Irwin Nazareth, Esther Crawley, Peter D. White in BMC Family Practice 2017 18:60 [published 5 May 2017]

BACKGROUND:

Our aim was to investigate patterns of health care resource use by patients before and after a diagnosis of CFS/ME, as recorded by Clinical Practice Research Datalink (CPRD) GP practices in the UK.

METHODS:

We used a case-control study design in which patients who had a first recorded diagnosis of CFS/ME during the period 01/01/2001 to 31/12/2013 were matched 1:1 with controls by age, sex, and GP practice. We compared rates of GP consultations, diagnostic tests, prescriptions, referrals, and symptoms between the two groups from 15 years (in adults) or 10 years (in children) before diagnosis to 10 years after diagnosis.

RESULTS:

Data were available for 6710 adult and 916 child (age <18 years) matched case-control pairs. Rates of GP consultations, diagnostic tests, prescriptions, referrals, and symptoms spiked dramatically in the year when a CFS/ME diagnosis was recorded. GP consultation rates were 50% higher in adult cases compared to controls 11-15 years before diagnosis (rate ratio (RR) 1.49 (95% CI 1.46, 1.52)) and 56% higher 6-10 years after diagnosis (RR 1.56 (1.54, 1.57)). In children, consultation rates in cases were 45% higher 6-10 years before diagnosis (RR 1.45 (1.40, 1.51)) and 62% higher 6-10 years after diagnosis (RR 1.62 (1.54, 1.70)). For adults and children, rates of tests, prescriptions, referrals, and symptoms were higher in cases compared to controls for up to 10 years before and after diagnosis.

CONCLUSIONS:

Adults and children with CFS/ME have greater health care needs than the rest of the population for at least ten years before their diagnosis, and these higher levels of health care resource use continue for at least ten years after diagnosis.

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Betsi Cadwaladr Health Board invites you to ‘join the conversation’ in North Wales

Posted on 05/16/2017 by wames

Betsi Cadwaladr Health Board says ‘Talk to us’

This is a general invitationl to let the Health Board know which issues concern you.

The Health Board appointed a clinical lead for ME and CFS some years ago, but so far has not supported him in implementing the Welsh Government Task & Finish Group for ME-CFS & FM recommendations to improve services.

This could be a good opportunity for North Wales residents to ask when this will happen and challenge them to introduce training for staff #HelpNHSbeMEaware

 

 

 

 

 

 

 

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Altered B cells found in whole blood gene expression in adolescent CFS

Posted on 05/16/2017 by wames

Research abstract

Whole blood gene expression in adolescent chronic fatigue syndrome: an exploratory cross-sectional study suggesting altered B cell differentiation and survival, by Chinh Bkrong Nguyen, Lene Alsøe, Jessica M. Lindvall, Dag Sulheim, Even Fagermoen, Anette Winger, Mari Kaarbø, Hilde Nilsen and Vegard Bruun Wyller  in Journal of Translational Medicine 2017 15:102 [Published: 11 May 2017]

Background:

Chronic fatigue syndrome (CFS) is a prevalent and disabling condition affecting adolescents. The pathophysiology is poorly understood, but immune alterations might be an important component. This study compared whole blood gene expression in adolescent CFS patients and healthy controls, and explored associations between gene expression and neuroendocrine markers, immune markers and clinical markers within the CFS group.

Methods:

CFS patients (12–18 years old) were recruited nation-wide to a single referral center as part of the NorCAPITAL project. A broad case definition of CFS was applied, requiring 3 months of unexplained, disabling chronic/relapsing fatigue of new onset, whereas no accompanying symptoms were necessary.

Healthy controls having comparable distribution of gender and age were recruited from local schools. Whole blood samples were subjected to RNA sequencing. Immune markers were blood leukocyte counts, plasma cytokines, serum C-reactive protein and immunoglobulins.

Neuroendocrine markers encompassed plasma and urine levels of catecholamines and cortisol, as well as heart rate variability indices. Clinical markers consisted of questionnaire scores for symptoms of post-exertional malaise, inflammation, fatigue, depression and trait anxiety, as well as activity recordings.

Results:

A total of 29 CFS patients and 18 healthy controls were included. We identified 176 genes as differentially expressed in patients compared to controls, adjusting for age and gender factors.

Gene set enrichment analyses suggested impairment of B cell differentiation and survival, as well as enhancement of innate antiviral responses and inflammation in the CFS group. A pattern of co-expression could be identified, and this pattern, as well as single gene transcripts, was significantly associated with indices of autonomic nervous activity, plasma cortisol, and blood monocyte and eosinophil counts. Also, an association with symptoms of post-exertional malaise was demonstrated.

Conclusion:

Adolescent CFS is characterized by differential gene expression pattern in whole blood suggestive of impaired B cell differentiation and survival, and enhanced innate antiviral responses and inflammation. This expression pattern is associated with neuroendocrine markers of altered HPA axis and autonomic nervous activity, and with symptoms of post-exertional malaise.

Trial registration Clinical Trials NCT01040429

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ME Awareness – interviews on BBC Radio Scotland

Posted on 05/13/2017 by wames

Stephen Jardine programme, BBC Radio Scotland 12 May 2017

Dr Charles Shepherd of the ME Association and Emma Shorter, organiser of #MillionsMissing in Scotland were interviewed on ME Awareness day.

Listen online until 10 June 2017

 

 

 

 

 

 

 

More about Emma & #Millions Missing:

Daily record, 10 May 2017: ‘Crippled by M.E but doctors say it’s MY fault’ Protest highlights plight of Scots sufferers who struggle with condition and have no drug therapy

Scotsman, 6 May 2017: ME sufferers seek help to defeat burden of chronic fatigue

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