.
16th may 2016
.
Action for ME Statement on its Facebook - 6 posts down on the AFME FB (on the link below).
.
Wildcat writes (here on PR, not on AFME FB): .... AFME have removed all posts from the thread about Dr Crawley's Paediatric prevalence Study. None of the posts were 'potentially defamatory' as AFME claims. I read them as they appeared and no posts were untoward.
.
AFME FB's Modus Operandi over many years has been to remove posts to its Facebook which are perfectly polite and reasonable, but which question AFME's policy and actions. AFME used to (wrongly) claim the removed posts violated FB rules. AFME's actions of removing reasonable posts was quite distressing to the patients whose posts were removed. This has been going on for years.
Now AFME have moved up a notch and are excessivley suggesting that posters could be in violation of defamation and libel law. Its difficult to now view AFME as a patient representation charity. It appears that only the most aquiescent (to AFME) posts are allowed on its Facebook. Waving a big stick around and pontificating about Libel Law is not the most welcoming stance for a patient Charity to take towards sick and disabled (many actually vulnerable) ME sufferers.
.
.
.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
.
.
Action for ME Statement:
.
https://www.facebook.com/actionforme/?fref=ts
"
Action for M.E. The Action for M.E. office is not open over the weekend, so we appreciate your patience in waiting for us to respond to comments posted about the research funding we announced last Friday.
We would like to respond to questions about the paediatric severe M.E. study being undertaken by Dr Esther Crawley at the University of Bristol as follows.
Our decision to fund this study was made in 2014. The process of ethical approval for this study by the British Paediatric Surveillance Unit (BPSU), securing funding and establishment of a legally binding contract with the University of Bristol has taken two years.
The British Paediatric Surveillance Unit, which is overseeing this study, was established in 1986 as a joint initiative of the Royal College of Paediatrics and Child Health, Public Health England and the Institute of Child Health. It has made a major contribution to paediatric medical epidemiology across the world, initiating more than 90 studies and publishing/ presenting more than 300 papers based on date from more than 3,400 paediatricians and doctors who see children in the UK.
The BPSU has a rigorous process for assessing methodology of all the studies it approves. This surveillance study of children and young people with severe M.E. complements the epidemiological programme of work studying populations undertaken by University of Bristol, which also includes the Grand Challenge (
://www.actionforme.org.uk/.../ceo-blog-prof-george-davey...).
We actively encourage and accept donations from a wider number of sources, including individuals and companies. The £6,000 with which Action for M.E. is funding this study was contributed by a private corporate donor with a specific interest in seeing the alleviation of childhood suffering. This sum has been match-funded by University of Bristol.
The study will examine incidence (the rate of newly diagnosed cases) as opposed to prevalence (the total number of current cases) of paediatric severe M.E. It is about numbers, not treatment: at no point in the study will the research team make a recommendation about, or be involved in, symptom management.
The paediatricians taking part in the study will report new cases of severe paediatric M.E. who fulfil the case definition using protocols developed by the BPSU, and complete postal/online questionnaires to record demographic, clinical and treatment data. This data will be anonymised so that individual patients cannot be identified.
Children and young people who have fatigue that can be explained by other conditions, or for whom routine blood tests and investigations (as set out on p 140 of the NICE guideline for M.E.) have not been completed to exclude other causes of fatigue, will not be included in the study.
All completed questionnaires will be examined by an expert panel to determine the how common severe paediatric M.E. is, how it presents and what symptom management approaches are offered.
While we welcome questions about our work, include the research we fund, we do not allow posts that are defamatory towards any individual or organisation. This is because we have a legal responsibility to now allow such comments to be hosted here and allowing them to remain could result in legal action being taken against us. We define defamation in our Terms and Conditions (
www.actionforme.org.uk/about-us/terms-and-conditions; see Appendix A) as follows:
“Defamation occurs when the defendant publishes a statement which tends to lower the claimant in the estimation of right-thinking members of society. Defamation therefore has three requirements:
• the statement must be defamatory (ie. the statement must have a negative impact on the claimant's reputation);
• the statement must identify or refer to the claimant; and
• the statement must be published by the defendant to a third party.
.
.
“Defamation is divided into two sub-categories: libel and slander.
“Libel is the publication in permanent form of a defamatory statement (eg. a newspaper article). Slander is the publication of a defamatory statement in transitory form (eg. a spoken statement). It is generally accepted that bulletin board exchanges on the internet are technically libel rather than slander.
“Ultimately there are shades of grey in this area of the law and so, in order to protect the charity, we will remove any statement that we feel is potentially defamatory.”
For this reason, we have deleted all comments and are no longer accepting comments on this thread. Any further comments will be removed."
.
.