I’m in activist mode again. It won’t last – I’ll flop in a heap any minute from feeling so utterly outraged.
I’ve just sent a message to Radio 4 You and Yours programme on an item they ran on CFS/ME recently. The segment got hijacked completely by the Lightning Process yet very little was actually said.
You can listen to the item yourself but I’m not sure it’s worth it unless you buy the Lightning Process tactics and want to know more. It’s not going to help you one jot to understand CFS or it’s treatment.
Here’s what I said to them:
Dear BBC (You & Yours Programme)
Re: 30/7/2007 Lightning Process / CFS item
I’m really disappointed that in a 14 minute item on Chronic Fatigue Syndrome (CFS), 13 minutes of it were focused on the Lightning Process.
This despite it being an unproven treatment, having had no clinical trials and being a private treatment not even offered on the NHS. Plus you had in attendance a consultant neurologist and Action for ME. These people are in a much better position to comment on what the 250,000 CFS sufferers in this country are faced. Much more experienced than a private practioner of a secret treatment which turns a profit.
I am hoping in the interests of balance you do more features on CFS/ME and look at things like:
The sidelining of ME in new guidance for Department of Work and Pensions that makes it incredibly difficult for sufferers to access benefits.
The scandal of research funding being diverted for too long by the psycho/social lobby in the UK. This despite the World Health Organisation recognising CFS as a neurological condition and experts agreeing it is not psychological in cause.
That every day hardworking dedicated people are struck down by this debilitating illness and they find themselves subjected to terrible treatment by their employers. Employers who find ways around the Disability Discrimination Act and leave people able to work jobless. Who shirk their repsonibility in retiring employees on the grounds of ill health because of the common perception that a cure is possible for CFS even though this has not been clinically documented as accurate or true.
That the mainstream treatments offered to NHS patients are actually management programmes or rehabilitive therapies – not cures.
That Japan is investing heavily in CFS research and USA is spending millions on awareness campaigns – but that in the UK we see a quiet sidelining of patients in medical research, treatments and benefits.
All of this is happening right now and yet you choose to focus on one profit making treatment. Very very disappointing.
Sufferers of CFS are a largely silent group, too ill to be seen outside their homes or to find the energy or brain power to express themselves. So the majority perception of this illness is formed by exposure like your programme. Congratulations in re-inforcing the idea that we can stop being ill by thinking differently and ignoring the realities of this illness for hundreds of thousands of people.
UPDATE: 20 August 2007
I have received a response from the Deputy Editor of the programme via email as follows:
“I‘m sorry you were disappointed with our discussion, I do believe that LP was a suitable topic for detailed assessment – it has received a lot of media attention in recent months and it is up to a programme like ours to attempt to get to the bottom of it. However as we acknowledged on the programme later in the week our discussion was unsatisfactory as an assessment of various treatments for ME. We simply got bogged down trying to find out how the Lightning Process is supposed to work and ran out of airtime – even though we dropped a five minute report on Home Information Packs.
We are intending to return to the wider issues surrounding ME in the autumn and I hope you won’t mind if one of our producers was to contact you during the research process.”
I reckon that’s quite a reasonable response. Especially considering my rather long Mrs Angry complaining. So I hope they don’t mind me posting it up. To their credit the presenter did try to press the LP practioner about how it works even though she continued to dodge the question.
I’m not quite so sure about the last bit of their response though. I’m not sure I am ready to represent CFS/ME. I’m not sure I can cope with worrying about whether I should or not.
But maybe it is worth speaking up. Otherwise how will anyone ever know?