New ME petition…

I emailed my ME contact group with details of this, then promptly forgot to post it here:-

“We the undersigned petition the Prime Minister to protect & help people receiving DLA who are having to reapply due to Government changes in how this benefit is allocated.”

“People who are genuinely chronically ill/disabled & have been receiving DLA/SDA are having to do battle with their local DHS/GP’s etc to reapply/appeal to have their allowances re-instated.This is causing untold stress, distress & adding to their illnesses & no doubt will cause ultimately some poor souls death. HOW DOES THE GOVERNMENT INTEND TO LOOK

Sign the petition here.

I signed it and a few minutes ago got the following from the “office of the Prime Minister”. It is mostly, I’m afraid, mendacious and self-serving bollocks, and completely ignores the points made in the petition:-

There is no established cause of chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). A number of different potential aetiologies including neurological, endocrine, immunological, genetic, psychiatric and infectious have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization classifies CFS/ME as a neurological illness, but we recognise that many others working in the field of CFS/ME believe that until research further identifies its aetiology and pathogenesis, there is a risk of restricting research into the causes, mechanisms and future treatments for CFS/ME. What is important to recognise that CFS/ME is a genuine and disabling illness and health professionals must recognise it as such.

As will all serious illnesses, it is important that patients, their families and the healthcare professionals looking after them have the best scientific information available and the PACE trial has been designed to help them decide for themselves what treatment is likely to be best from them. There is currently very little information about the relative benefits of cognitive behaviour therapy (CBT) and graded exercise treatment and a scientific trial is the only way to find out which is the most effective approach.

The aim behind CBT is to support a sustainable improvement in functioning and adaption to illness, via gradual steps that are mutually agreed and regularly reviewed by patient and clinician. Applied appropriately, CBT can help the patient cope confidently with their illness and help them adjust to some of the consequences of being unwell and to feel more in control of their illness. In common with other illnesses such as cancer where it has been successfully used, its use does not imply that the cause of the illness is psychological.
As with any treatment, an explanation of the benefits and possible harmful effects of CBT should always be provided before decisions are made to offer and accept the treatment. It is important that health professionals recognise that people can vary in response to the treatments available and that it is appropriate to review therapy if symptoms appear to worsen as a result.

The Medical Research Council’s support for the PACE trial does not mean that money is not available for biomedical research and the Council remains committed to funding scientific research in all aspects of CFS/ME. Nevertheless it is important to maintain high standards in funding decisions and the MRC maintains a rigorous a decision making process, only funding research that is likely to make a significant contribution to knowledge and is a good use of tax payers’ money. The decision to reject proposals is taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base.

This is my reply:-


(As the email to which I am responding is rather discourteously anonymous, I have no idea what the appropriate salutation might be – this will have to suffice.)

Very interesting – the first rapid-response I’ve had to a petition. I wonder why – I surely didn’t get one to the last ME petition I signed which, apparently, sank without any official comment at all.

However, you completely fail to address the issues raised by the petitioner and, sorry, but simply re-stating the NICE/DWP party line is insulting to every member of the ME community, among whom I number myself. Now, do you think you can do us all the courtesy of giving some thought to the points raised in the petition, and responding rather more appropriately? Thank you.


Ron Graves.

If you, too, got this crapulous reply from the government, which is, after all, elected to look after our interests (ha!), then do, please, reply to it (if you want to copy mine, you can, gladly) – don’t let them get away with just brushing us off.

Update: I accessed the petition website and I had a look at the list of signatories – MY NAME HAS BEEN DELETED! Somehow, I doubt that this blatant act of censorship is entirely unrelated to my challenging their egregious reply.