This is a radio programme that ME Association medical adviser Dr Charles Shepherd has been liaising with the BBC about over the past few months.
It will be broadcast next Tuesday, 27th June at 8pm, on BBC Radio 4 (link below).
While we don’t know what the final content will be, we hope it will reflect the reality of life with ME/CFS. Earlier this month Dr Shepherd had the following to say about this programme in a related discussion on MEA Facebook:
“Having just spent nearly two hours with the BBC this morning I hope I can once again reassure people that this is going to be a constructive, helpful and quite long BBC radio programme that will be covering (in particular) issues relating to the management of children and adolescents with ME/CFS, controversies surrounding the PACE trial, and the re-analysis by Wilshire et al of the PACE trial data on recovery.”
“During the very wide ranging interview and briefing that I did this morning with the BBC we covered:
- The history of ME/CFS – in particular the Royal Free Outbreak in 1955, The Lancet coverage in 1956, and publication of the 1970 BMJ papers on mass hysteria
- Other historical outbreaks and clusters and the comparison with endemic ME/CFS
- Nomenclature: ME and CFS, including how the split in nomenclature came about in the 1980s
- What is ME/CFS
- Severe ME/CFS
- Children and adolescents: use of GET, problems with education and schools; child protection cases; meetings with the Chief Social Worker for Children and Adolescents (Mrs Isabelle Trowler) at House of Lords to discuss child protection cases
- PACE trial: history; flaws in patient selection, discredited Oxford Criteria, study design and outcome assessment; FoI requests; FoI tribunal; re-analysis of recovery data, MEA petition opposing the PACE trial
- What is CBT, GET and Pacing and what happens in practice in the NHS referral centres/services
- Patient evidence from the MEA reports on acceptability, safety and efficacy of CBT, GET and Pacing
- NICE guideline on ME/CFS – why it recommends CBT and GET and why the 2007 guideline needs revising
- DWP benefit problems and DWP funding for the PACE trial
“And as previously noted, this is not a programme about current research into the underlying cause of ME/CFS.”
The BBC Radio Four website now reveals:
File on 4: Children with ME
“File on 4 investigates claims that parents whose children suffer from a crippling illness that leaves them sick and permanently exhausted have been falsely accused of child abuse.”
“Parents of children with Myalgic Encephalomyelitis (ME) reveal how they have been investigated and referred for child protection measures on suspicion of a rare form of child abuse known as Fabricated or Induced Illness (FII).”
“FII, also sometimes known as Munchausen’s Syndrome by Proxy, is extremely rare and occurs when a parent or carer exaggerates or deliberately causes the symptoms of a child’s illness. One charity says FII is being used inappropriately by education and health professionals. We talk to families who claim the stress caused by this accusation has made their children worse.”
“With doctors divided over the best way to treat children, what’s the impact on families?”
Children with ME. BBC Radio 4, Tuesday, 27th June, at 8pm.