healclick.com rhwydwaith cymdeithasol

www.healclick.com is a new full-featured social network for 40-and-under patients with neuro-immune illness (ME/CFS, Chronic Lyme Disease, Fibromyalgia, Atypical MS, MCS, mold illness)

It aims to:

  • Connect patients that have the most medical details in common, so they can share their treatment experiences with each other
  • Help patients visualize health changes over time using the comprehensive health tracker.
  • Collaborate with researchers to find answers for our illness.

 

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Cystadleuaeth farddoniaeth i godi ymwybyddiaeth

CF Alliance Poetry Contest

Spread the word about CFS, ME & FM and have your poem printed on awareness postcards.

The deadline is Tuesday , 1st April, 2014.

Poetry Contest Guidelines

  1. Poems can be rhyming or non-rhyming.
  2. We suggest that you write about real emotions and insights that you have about living with a chronic illness.
  3. Poems are judged on the basis of originality and uniqueness.
  4. language entries only, please.
  5. Only one entry per person and/or per address.
  6. Eight poems will be selected for printing on an awareness postcard.

The contest is open to all Facebook or Yahoo Group CF Alliance members

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Ymarfer corff a ME / CFS fideos

Presentations from the “Exercise and ME/CFS” evening in Bristol on Feb 5th 2014 are now online. Speakers are Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman.

Prof Mark VanNess from the Workwell Foundation explains how damaging aerobic exercise can be for patients with ME/CFS. Their 2 day testing protocol demonstrates an astonishing post exertional amplification of symptoms in ME patients; a hallmark symptom of ME. This damage to the aerobic energy system means that it is utterly counter productive to try to use aerobic exercise to improve health in these patients…

He also explains how patients can try to find a more appropriate way of managing their activities of daily living and exercise, by trying to avoid causing any worsening of symptoms and so allowing their bodies a better chance of healing. He explains about analeptic exercise, which means restorative; not causing relapse!

Dr Nigel Speight talks about some of the kinds of cases where he is asked to try to protect children from being mistreated by professionals who are misinformed about ME, or abdicating responsibility… He, more than anyone in this country, sees the worst cases; the cases where people are most ill and the cases where children are being mistreated and families threatened with having their ill children taken from them or forced to under go harmful treatment programmes. This video shows the anger and frustration with the current state of affairs that such scenarios evoke in a caring paediatrician. He describes his supportive and empowering management approach to the illness, which recognises that children are suffering a severe physical illness.

Erinna Bowman is part of the Cure ME team at the London School of Hygiene and Tropical Medicine. As well as explaining some back ground information about their work she covered some of the essential issues that have contributed to the confusion around the diagnosis and treatment of patients revealed by the previous speakers. She mentioned the wide variety of definitions and the wide predictions of prevalence resulting from such varied definitions…  She explains about their new research projects funded by the USA’s NHI which will involve immunological, virological and gene expression analyses and describes the previous work on the biobank and its further development as a result of the new funding.

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Mae pobl ifanc yn teimlo’n ddiogel ar-lein? arolwg

The Welsh Government want to find out more about young people’s e-safety in Wales.

Three surveys have been created in both Welsh and English:

  • one for children and young people 0-18 years old
  • one for parents
  • one for professionals working with young people.

All responses to the surveys will be collected and a landscape evaluation report created, from this recommendations will be made which will then go on to help create an e-safety curriculum for Wales.

This is a short survey and should only take about 5 minutes of your time but it can help to make a huge difference to the safety of young people in Wales on the internet.

If you would like to find out more about keeping yourself safe online then visit this online safety page.

If you are worried about anything and need to talk to someone then Meic, the advocacy, information and advice helpline for children and young people in Wales, can help you. You can call the helpline free on 080880 23456, text them on 84001 or chat to them online. All information you give is confidential.

To find the right survey for you visit this page.

 

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Shop online through easyfundraising.org.uk – raise money for WAMES

Do you shop online?

Register with easyfundraising.org.uk in 3 easy steps and raise money for WAMES at no cost to yourself. Every time you want to shop, go to easyfundraising.org.uk and select any of 2,700+ stores. Retailers include:

  • Amazon
  • high street stores like John Lewis, M&S, Argos,
  • Ebay
  • Grocery stores like Sainsbury, Tesco
  • Transport sites like Trainline
  • Insurance companies
  • Mobile phone companies
  • Holiday companies like Thomson, and many more…

Ask friends and families, employers and colleagues to join easyfundraising and ‘choose WAMES’.

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Fideos ar-lein gan arbenigwyr ME

Dutch patient group ME/cvs Vereniging has hosted 30+ 3-10 minute talks about various aspects of ME on their Youtube page.

Speakers include: Dr Nigel Speight (WAMES advisor); Prof Dr Kenny Meirleir; Prof Dr FC Visser; Dr Meinte Vollema, Dr Charles Shepherd (MEA).

Most either are in English or have English subtitles.

Topics include: sleep; hormones; pain; children; POTS, subgroups etc.

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Allech chi fod yn ysgrifennydd 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 necessary.

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 experience, or who wishes a career in the 3rd sector .

For more information: contact Jan

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Severity of infection leads to CFS in adolescents

Abstract

This study focused on identifying risk factors for adolescent post-infectious chronic fatigue syndrome (CFS), utilizing a prospective, nested case–control longitudinal design in which over 300 teenagers with infectious mononucleosis (IM) [aka EBV or glandular fever] were identified through primary care sites and followed. Baseline variables that were gathered several months following IM, included autonomic symptoms, days in bed since IM, perceived stress, stressful life events, family stress, difficulty functioning and attending school, family stress, and psychiatric disorders.

A number of variables were predictors of post-infectious CFS at six months; however, when autonomic symptoma were used as a control variable, only days spent in bed since mono was a significant predictor. Step-wise logistic regression findings indicated that baseline autonomic symptoms as well as days spent in bed since mono, which reflect the severity of illness, were the only significant predictors of those who met CFS criteria at six months.

Discussion

IM appears to be a predisposing factor for some individuals who develop CFS, especially adolescents (Feder et al., 1994; Smith et al., 1991). Many candidate risk factors have been proposed to explain this phenomenon, but almost all lack prospective data from before IM or CFS. According to this study, significant baseline predictors in the step-wise logistic regression included autonomic symptoms and days spent in bed since the onset of IM. This suggests that indices of illness severity are the best predictors for adolescents destined to develop CFS following IM. It is reasonable to conclude from our study that during the first few months following IM, young people who have more limitations and are more impaired, are subsequently more likely to develop CFS. Our findings are thus comparable to those of Hickie et al. (2006), who followed patients with mononucleosis (glandular fever), Q fever, and Ross River virus who later met criteria for CFS. Development of CFS in their cohort was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors.

Psychological distress has been found to play a significant role in relation to the course of oral and genital herpes virus reactivation, exacerbation of HIV and the development of IM (Carver, Connallon, Flanigan, & Crossley-Miller, 1994; Cohen & Williamson, 1991; Glaser et al., 1991; Imboden, Canter, & Cluff, 1961; Kasl, Evans, & Niederman, 1979; Perry, Fishman, Jacobsberg, & Frances, 1992). However, Hickie, Koschera, Hadzi-Pavlovic, Bennett, and Lloyd (1999) found that chronic fatigue is a persistent diagnosis over time and that longitudinal patterns of comorbidity of fatigue with psychological distress did not suggest a causal relationship or common vulnerability factor. This study also did not find that psychiatric disorders assessed a few months after developing IM were associated with the development of CFS, after controlling for ACS.

Several studies have identified family stress as a precursor to CFS (Carter et al., 1999; Van Middendorp, Geenen, Kuis, Heijnen, & Sinnema, 2001). The studies by van Middendorp and Carter were of children referred to psychologists, in whom one would anticipate a higher rate of behavioral factors. In these studies, along with a potential for referral bias, these adolescents most likely are not representative of the CFS population as a whole. Taylor, Jason, and Jahn (2001) found prevalence rates of sexual and physical abuse among individuals with CFS comparable to those found in individuals with other conditions involving chronic fatigue. Our study also did not show a relationship between familial stress and the development of post-infectious CFS.

Brown, Bell, Jason, Christos, and Bell (2012) examined long-term outcomes of 25 people who were diagnosed with CFS while they were adolescents, approximately 25 years ago. Of the 25 participants, only 5 self-reported maintaining that diagnosis, while 20 reported remission. In spite of their self-reported remission, however, those 20 participants showed significantly more impairment compared with controls, demonstrating that, while adolescents diagnosed with CFS may show improvement over time, they still suffer some level of impairment and may not return to their premorbid level of functioning. Clearly, given the long-term effects of CFS, it is critical to better understand potential risk factors associated with this illness.

It is important to note that the baseline visit occurred within a median of two months of the diagnosis of IM, but the diagnosis of mono itself would have taken some additional time. A reasonable assumption about IM in adolescents is that symptoms are present for up to a month before diagnosis, making the time for administration of the questionnaires up to three months after the onset of illness. Therefore, some of the stressful life events recorded might have occurred in the three months after the onset of IM and might, therefore, have been influenced by the illness severity rather than by prior family stress. Questions on the PSS begin with the wording: “In the last month, how often have you … ” Due to the timing of enrollment, the perceived stress may also be more likely to reflect the stress caused by the illness rather than perceived stress when the individual was healthy. Thus, our study cannot address the issue of whether pre-IM stress is a risk factor for developing CFS following IM in adolescents. While it is true that the Life Events Questionnaire for Adolescents asked about life events in the preceding year, we were not able to specifically tease out those events that occurred prior to the onset of IM. It is also important to differentiate difficulty in school functioning (which infers a behavioral problem) from illness severity as risk factors for the development of CFS following IM, which this study was also unable to accomplish.

This study has several other limitations, including modest sample size and data only at a six-month assessment following IM. In addition, the sample was relatively homogenous in terms of gender and ethnic group. There is a need for more long-term studies with larger community-based samples in order to better identify the predisposing medical and psychological risk factors involved in the development of pediatric CFS. Future studies might examine biological data on symptom severity at onset of IM (such as thromobocytopenia or anemia) in those who develop CFS versus those that do not following IM.

The relationship between IM and CFS needs to be fully understood; not only for comprehending the relationship between the two illnesses, but also for healthcare-provider guidance to adolescents and their parents. The prevention of the progression from IM to CFS not only saves the patient from the potential of lifelong disability, financial dependency, and the potential for ensuing depression, but may save the family from life-altering care-giving and financial responsibilities; the stresses of which alter the family dynamics so drastically and detrimentally that the family unit itself may not survive.

Predictors of post-infectious chronic fatigue syndrome in adolescents by Leonard A. Jasona, Ben Z. Katzb, Yukiko Shiraishic, Cynthia J. Mearsd, Young Ima & Renee R. Taylore in Health Psychology and Behavioral Medicine Volume 2, Issue 1, 2014

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Gofal iechyd synhwyrol ac ME

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   Press release in Welsh

Sir Mansel Aylward on prudent healthcare

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Are ME and CFS different illnesses?

Abstract

Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from Myalgic Encephalomyelitis.

A prior study contrasted the Myalgic Encephalomyelitis International Consensus Criteria with the Fukuda and colleagues’ chronic fatigue syndrome criteria and found that the Myalgic Encephalomyelitis International Consensus Criteria identified a subset of patients with greater functional impairment and physical, mental, and cognitive problems than the larger group who met Fukuda and colleagues’ criteria.

The current study analyzed two discrete data sets and found that the Myalgic Encephalomyelitis International Consensus Criteria identified more impaired individuals with more severe symptomatology.

Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis,  by LA Jason, M Sunnquist, A Brown, M Evans, JL Newton in J Health Psychol. 2014 Feb 7. [Epub ahead of print]

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