International criteria identifies distinct subgroup in CDC definition of CFS

Posted on 05/21/2014 by wames

Abstract

Background: Several diagnostic definitions are available for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) that varies significantly in their symptom criteria. This pilot study was conducted to determine whether simple biological and clinical measures differed between CFS/ME patients meeting the 1994 Centres for Disease Control and Prevention (CDC) criteria, the International Consensus Criteria (ICC), as well as healthy controls.

Methods: A total of 45 CFS/ME patients and 30 healthy controls from the South East Queensland region of Australia provided a blood sample, reported on their current symptoms, as well as aspects of their physical and social health using the Short-Form Health Survey (SF-36), and the World Health Organisation Disability Adjustment Schedule 2.0 (WHO DAS 2.0). Differences were examined using independent sample t-testing.

Results: Patients fulfilling the ICC definition reported significantly lower scores (p < 0.05) for physical functioning, physical role, bodily pain, and social functioning than those that only fulfilled the 1994 CDC definition. ICC patients reported significantly greater (p < 0.05) disability across all domains of the WHO DAS 2.0.

Conclusions: These preliminary findings suggest that the ICC identifies a distinct subgroup found within patients complying with the 1994 CDC definition, with more severe impairment to their physical and social functioning.

A comparison of health status in patients meeting alternative definitions for chronic fatigue syndrome/myalgic encephalomyelitis, by Samantha C Johnston et al in

Health and Quality of Life Outcomes 2014, 12:64

 

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Gwyn’s 7 day sponsored walk succesfully completed

Posted on 05/21/2014 by wames

Gwyn says:

“Mission complete, I walked over 122 miles and I finished on schedule. My right ankle was a little swollen but other than that I was in good shape.

I enjoyed the variety of the walk, passing over farmland, small country roads with beautiful hedgerows, through bluebell woods, the coast path with fantastic sea views and many butterflies, birds and wild flowers, Preseli mountains with their boggy areas and wild ponies and some main roads.

I met some interesting people along the way, some who generously donated to M.E. Research UK.

I camped for the first three nights but it was close to freezing and I didn’t sleep well because of the cold, so I had a night in Newport Hostel and then two B&B’s (with BATHS, oh what joy!)”

So far Gwyneth has raised over £572 for ME Research UK

Gwyneth’s Justgiving page

Gwyn’s website

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Gwyn’s 7 day sponsored walk

Posted on 04/29/2014 by wames

Recovered ME sufferer Gwyneth Hopkins will walk round Pembrokeshire for 7 days from May 11th – 17th. She plans to start at Haverfordwest at 10am Sunday 11th May, then go around the top of Cleddau estuary to Lawrenny ,then Lydstep, Tenby, past Narbeth and over the Preseli hills to Newport, St. Davids and back to Haverfordwest. She expects to walk approx. 125 miles

She wishes to raise awareness of ME and money for ME Research UK. Also to let people know about the ME Group in Haverfordwest (for details contact Tina 01437 454359)

Donate at Gwyn’s fundraising page

Or contact Gwyn on 01646 636683 or email her. During the walk you may contact her on 07950160389 for updates and if you want to join in for a few miles you’re welcome.

 

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Review of the role of T cells in the ME/CFS immune system

Posted on 04/24/2014 by wames

Abstract

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a multifactorial disorder defined by symptom-specific criteria and characterised by severe and prolonged fatigue. CFS/ME typically affects a variety of bodily systems, including the immune system.

Patients with CFS/ME exhibit significantly reduced Natural Killer (NK) cell activity suggesting immune which may be hallmarks of changes in the adaptive immune system, potentially including T cell subsets and function. The principal purpose of T cells is to regulate immune responses and maintain immune homeostasis.

These regulatory measures can often be compromised during illness and may present in a number of diseases including CFS/ME. This review paper examines the role of T cells in CFS/ME and the potential impact of T cells on CFS/ME immune profiles with an evaluation of the current literature.

Conclusion

A number of studies have assessed T cells in CFS/ME, although further studies are required to obtain consistency and validation of results. Assessment of T cell cytokines in CFS/ME patients based on PBMCs is not the most appropriate method of assessing these cells as they are not specific to subsets of T cells that vary in cytokine secretion. Similarly, assessment of CD8 + T and CD4 + T cells and cytokine profiles, may highlight specific cells that may be affected in CFS/ME patients. In particular, Tregs and their regulatory activities may deserve closer investigation. Subgrouping of CFS/ME patients may be necessary in the future to determine whether T cell subsets and function differs among CFS/ME patients based on their variation of disorder onset or severity.

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and the Potential Role of T Cells by S. L. Hardcastle, E. W. Brenu(a), D.R. Staines, S. Marshall-Gradisnik in Biological Markers and Guided Therapy Vol 1 2014

 

 

 

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Symptoms of Meares-Irlen/Visual Stress Syndrome in CFS

Posted on 04/24/2014 by wames

Abstract

Several diagnostic symptoms of the visual-processing deficit Meares-Irlen/Visual Stress Syndrome are remarkably similar to symptom manifestations reported by individuals with chronic fatigue syndrome (CFS).

We surveyed the specific incidences of nine widely-recognised symptoms of visual stress (VS) in a group of subjects (n = 20) previously diagnosed with CFS. The presence of each symptom of VS in the CFS group was compared to its respective presence in both an age and sex matched healthy comparison group (n = 46), and an age and sex matched group comprised of individuals (n = 14) diagnosed with VS.

Results showed the frequencies of all nine VS symptoms in the CFS-diagnosed group to be significantly higher (p = .032 – p < .0005) than in the comparison group, with only two symptoms being statistically less frequent in the CFS group than in the VS-diagnosed group. The average number of VS symptoms reported by the CFS group was also significantly higher than the comparison group, yet not significantly different from the VS group.

Thus, the occurrence of VS symptoms in subjects diagnosed with CFS appears to be far greater than previously reported, which in turn may indicate the interplay of some yet to be identified underlying factor(s) common to both conditions.

Symptoms of Meares-Irlen/Visual Stress Syndrome in subjects diagnosed with Chronic Fatigue Syndrome, by J. Loewa, Nigel V. Marsh, Kenneth Watson in International Journal of Clinical and Health Psychology Volume 14, Issue 2, May 2014, Pages 87–92

 

 

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Home-based self-management program suitable for chronic fatigue

Posted on 04/23/2014 by wames

Abstract

Purpose: This study evaluated the feasibility of a 12-week home-based self-management program for unexplained chronic fatigue (UCF) or chronic fatigue syndrome (CFS).

Methods: Self-report outcomes included measures of fatigue impact, physical function, depression, and global change. A web diary measured daily compliance with self-management activities.

Results: Study withdrawals (20.8%) were due to time constraints, confidentiality concerns, or illness recovery. Subjects (N = 19) showed excellent compliance (62.3%) on the web diary. Participant feedback indicated high satisfaction. Effect sizes were large for fatigue severity, physical functioning, and depression.

Conclusions: A home-based self-management program for UCF and CFS may offer improved patient access to treatment that may be unavailable, inconvenient, or costly.

Feasibility of a home-based self-management program for chronic fatigue, by Fred Friedberg, Man Chi Ngan & Jeremy Chang in Fatigue: Biomedicine, Health & Behavior 14 April 2014

 

 

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WAMES AGM 1st April

Posted on 03/26/2014 by wames

The WAMES AGM will take place on 1st April in Dinas Powys. This will be a short business meeting to report on the activities of the past year and plan the priorities for the coming year.

Contact Jan if you have any comments about WAMES or issues you would like the committee to consider.

The post of secretary will become vacant following the AGM and we would love to hear from anyone who thinks they might be interested, as this post is vital for the smooth running of WAMES. More info

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Could you be the WAMES secretary?

Posted on 03/03/2014 by wames

The WAMES secretary’s post will become vacant at the April AGM.

This post is critical for the smooth running of WAMES, an organisation which works to improve services and provide a better quality of life for people with ME in Wales.

Responsibilities would include:

  • attending an annual AGM in south Wales
  • compiling and distributing minutes and agendas
  • organising e-meetings
  • producing documents
  • monitoring policies
  • correspondence
  • general administration.

The secretary would also be a trustee who shares responsibility with the rest of the committee for overseeing WAMES’s work.

Person specification: We are looking for someone who is organised, computer literate and able to work from home.

Support: We can provide support, expenses and training as neces-sary.

The post is open to anyone living in Wales but would be ideal for someone who has a long term plan of returning to work and needs experi-ence, or who wishes a career in the 3rd sector .

For more information: contact Jan

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Prudent healthcare and ME

Posted on 02/18/2014 by wames

On 16th January 2014 the Health Minister introduced the principles of ‘Prudent healthcare’ which would shape future development of services in NHS Wales:

  • Do no harm
  • Undertake the minimum appropriate intervention
  • Work in co-production with the patient, to consider “what can we do together to address the difficulties that you are experiencing”
  • Deliver healthcare that fits the needs and circumstances of patients, and actively avoids wasteful care that is not to the patient’s benefit
  • Deliver healthcare on the basis of equity, with clinical need and nothing else determining treatment by the NHS.

He explained that this would require a change of attitude:

“the traditional way that people think of health services is as an escalator in which we are always pushing people up the levels of intervention and somehow the higher up the intervention levels you go the more prestigious it becomes and the more you feel you’ve got something good out of the health service. Prudent medicine is about saying the more we can do at a citizen level, the more we can do at a population level, the more we can do at a primary care level then the better the service we provide to patients.”

In hospitals secondary care needs to pay more attention to the list of interventions that are not normally undertaken, the INNU document (Interventions that are not normally undertaken), and NICE’s 867 ‘do not do’ clinical guidelines

4 groups will be convened to apply the prudent healthcare principles to Orthopaedics, Prescribing, ENT services and Pain management services.

The ME/CFS Task & Finish Group is due to hold its 2nd meeting on 21st February and has been instructed to work within these principles.

Summary of Health Minister’s address

Sir Mansel Aylward on prudent healthcare

 

 

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Should all people with suspected ME be referred to a specialist?

Posted on 02/11/2014 by wames

Should all people with suspected ME be referred to a specialist?

  • Yes - any medical consultant with an interest and expertise (56%, 9 Votes)
  • Yes, to a neurologist (38%, 6 Votes)
  • No, only those whose diagnosis is uncertain (6%, 1 Votes)
  • No, only those with complex symptoms (0%, 0 Votes)
  • Not necessarily to a medical specialist but definitely to a rehab specialist team (physiotherapist, OT, psychologist, dietician) (0%, 0 Votes)

Total Voters: 13

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Email us have any comments on this poll.

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