Tymes Trust Alert 2014-06 Message from Jane 10 August 2014 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== FALSE ALLEGATIONS OF CHILD ABUSE IN CASES OF CHILDHOOD MYALGIC ENCEPHALOMYELITIS (ME): A new peer reviewed paper by Jane Colby This paper contains referenced information on ME relevant to all, whether or not you have faced allegations. ====== FALSE ALLEGATIONS OF CHILD ABUSE IN CASES OF CHILDHOOD MYALGIC ENCEPHALOMYELITIS (ME) This peer reviewed and referenced paper, commissioned by the journal Argument and Critique, describes - and comments on - what is happening to some families, set in the context of research studies. As you will see from the Abstract below, I have covered matters about ME that are very relevant to everyone. In particular, if you are being pressurized to follow a management plan, or to increase school attendance, I do suggest that you take time to read it through, and then feel free to forward it to anyone whom you think should have this information. *Abstract: (separated into different points for your convenience) There is no cure for ME (Myalgic Encephalomyelitis). In its absence, management regimes are prescribed, typically based on cognitive behavioural therapy (CBT) and graded exercise therapy (GET). In the case of children this may involve the application of Child Protection powers to enforce treatment. NICE confirms that patients may withdraw from treatment without effects on future care, but parents who decline, or withdraw children from, management regimes, which may have worsened their illness, can find themselves facing investigation for child abuse or neglect, or have their child forcibly confined to a psychiatric unit. Tymes Trust has advised 121 families facing suspicion/investigation. To date, none of these families has been found to be at fault. Subsuming ME under the heterogeneous term Chronic Fatigue Syndrome (CFS) has confounded research and treatment and led to disbelief over its severity and chronicity. As evidence points to persistent viral infection, recommendations have been made to separate ME from CFS. International consensus criteria for ME emphasise post-exertional deterioration as distinct from fatigue. If the child with ME deteriorates under management regimes, re-diagnosis with a psychiatric condition can mask treatment failure and lead to blame attaching to the parent. A more constructive redeployment of resources away from Child Protection investigations into appropriate practical support for these seriously unwell children, should be developed. --- Colby, J. 2014 False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME), Argument & Critique, July. http://www.argumentcritique.com/publications.html ===== STRIPEYSOCKS BLOG For Severe ME Day (8th August) I joined in the social media activities by blogging about my memoir of having severe ME myself: "A couple of years ago I wrote a memoir about my blackest times enduring severe ME. When I was living it, it seemed never-ending..." www.methenewplague.net/blog/2014/08/08 Also on my blog, you can find my speech, given at the House of Lords in June as part of our 25th Anniversary. The speech focused on the Trust's theme for the year: FIGHTING INJUSTICE. My new paper on False Allegations fits well with this theme. There are further initiatives coming up in which you can join. www.methenewplague.net/blog/2014/06/11 You can check in to find my latest news and comments on Twitter - you don't have to join Twitter, just go to www.tymestrust.org and follow my tweets there. I tweet something on most days. With all best wishes Jane Jane Colby FRSA Executive Director The Young ME Sufferers Trust PO Box 4347, Stock, Essex, CM4 9TE www.tymestrust.org Tel: 0845 003 9002 Holder of The Queen's Award for Voluntary Service: The MBE for Volunteer Groups ====== READ ALL PREVIOUS ALERTS AND SUBSCRIBE TO MY LIST AT www.tymestrust.org To unsubscribe, send an email via the website Contact Us form. ====== You are welcome to redistribute or reprint this email without seeking our permission provided: 1) you do not abbreviate, add to, or change the text in any way; 2) the authorship information is retained; and 3) www.tymestrust.org is credited as the source. Jane Colby is Executive Director of The Young ME Sufferers Trust. She was a Headteacher for nine years, a member of the government Chief Medical Officer's Working Group on CFS/ME and co-authored ME/CFS In UK Schools, the largest epidemiological study of ME to date. She is a life member of the National Association of Head Teachers and a Fellow of the Royal Society of Arts. Copyright (c) 2014 The Young ME Sufferers Trust