If you are a British ME sufferer or carer you can find a link to take to questionnaire online on their home page www.meassociation.org.uk

It took me around half an hour to complete on a go-slow :o)

Paper copies are also available on request from ME Association.

"To mark ME Awareness Month, The ME Association wants to hear from as many people as possible about their experiences – good or bad – of coping with ME.

To do this we have produced a questionnaire which asks about treatments that work, treatments that don't work, and what people want when it comes to GP and hospital based services.

We also want to build up the biggest ever picture of what happens when people are given cognitive behaviour therapy or graded exercise therapy – two controversial forms of treatment that have been recommended in a guideline produced by NICE.

We can then go back to the Department of Health with a really comprehensive nationwide picture of this illness, along with recommendations on how diagnosis and services can be improved.

The survey will be open until 31 August 2008. "

Before I had this blog, back when I used to talk about ME/CFS on my dizzysky blog I came up with some ideas of how you (and I) could do our bit.

This year I've tried to simplify things to one idea for my blogging friends. 

We will blog on (or around) 12 May 2008 about ME/CFS to raise awareness and join hands across the blogosphere (umm compile a list and pingback) whilst we do it.

So I'm enlisting your support to blog along with me from my art blog (it has more passing traffic than this one) and you can read the details of how to join in here:

http://rachelcreative.wordpress.com/2008/04/18/blogging-for-me-cfs-2008/

I have badges you can use if you want to on your blog.

That whilst they make some progress the recommended treatments of GET (Graded Exercise Therapy) and CBT (Cognitive Behavourial Therapy) are management therapies not treatments?  And that these therapies can be harmful to CFS patients? 

That studies have shown that GET can make sufferers worse and whilst CBT can be helpful in learning to deal with a chronic illness it is not a treatment for the physical disorder and not considered a first line treatment in other physical chronic conditions.

Ok well I might not have said all of that exactly LIKE that but ...

A group called The One Click Group is planning to take legal action over the NICE guidelines for CFS/ME.  They say that the NICE group was skewed towards the psychological CFS lobby and that medical evidence and research was disregarded.  That NICE have acted unethically.

They also say that stating GET and CBT as primary treatments for CFS despite research which says it is potentially harmful - is a violation of patients human rights. 

It's a big claim - but you know it makes sense when you think about it. 

CFS is a dumping ground for misdiagnosis.  We're perpetually told there is no single test for CFS/ME and no distinguishing markers other than a lack of any other physical illness.  But it's not actually true.  You can run tests to establish common abnormalities.  You can also run tests to rule out other disorders. 

My GP had to be very insistent with the lab in order to get my test for Lymes Disease processed. It's not a usual test - they say.  Which makes me wonder how many people in my area with CFS have never had the test done.  I digress.

The rally call comes from One Click Group to support the court action and not just let an inbalanced set of guidelines stand unchallenged.  These guidelines which have a real impact on our treatment and health, and which send the wrong signals out to all agencies and to other countries.  One Click are asking for cash to help with the legal costs - at this point a commitment to a donation.  If they don't raise the full amount they will not proceed.  And all donations will be anonymous. 

There's lots more info on the One Click site site.  It makes interesting reading (but they could do with some succinct summaries for the foggier among us).

A small donation doesn't seem much to try and get these guidelines reviewed.  If they're right and we're wrong then let it be proven so. 

There's too much going on out there that has not been listened to in preparing this document.  If they don't have effective treatments then say so - don't pass off inadequate therapies as proper treatments.

And it's not just a UK issue - you can bet where an easy answer that generates big bucks for some people is accepted here, it will be used as leverage in other countries too.

Exercise and physological therapies for physical illnesses under a blanket diagnosis - coming your life soon?

"Professor Dame Carol Black, the Government's national director of health and work, wants requests for sick notes, which currently go to GPs, instead to be scrutinised by teams of experts who would attempt to speed an employee's return to work.

In a review due to be submitted to ministers in January, Dame Carol will propose the creation of "back to work" teams, based at GP practices, to which patients seeking sick notes would be referred.

The teams, staffed by physiotherapists, nurses, psychologists and employment advisers, would offer services that attempt to get patients back to work as soon as possible, instead of providing them with a sick note on demand.

Dame Carol said: "Too often doctors reach for a sick note when what is needed is some quick therapy, to agree adjustment to their working life, and to get them back to work."

From The Telegraph "Get Tough on Sick Notes"

Give us a break Dame Carol.  Life is tough enough without you putting the squeeze on too. 

There's a petition for UK residents and ex-pats here http://petitions.pm.gov.uk/SickNotesGPs/sign

It's 1.30pm and I'm just finished number 6.

1. Having my sold my first ever Ebay item figure out what to do next
2. Having sent hubbie to the post office this morning email my latest Amazon buyer and tell them their item is on it's way
3. Read a fab letter from my local Liberal Democrat Councillor after I emailed her expressing my concern and objection to Tesco redeveloping their site in my city (to make a bigger uglier store and suck all the character out of the area).
4. Make an online planning objection to said Tesco development
5. Email my MP about signing the Early Day Motion about large supermarkets and their power
6. Eat lunch
7. Have a wash
8. Get dressed
9. Decamp to sofa downstairs
10. Have evening meal

I think I may need a 6b.  Mess about on the internet a bit more. :-)

Although the guidelines remain controversial with widespread criticism from "patient groups" in the UK it seems the press coverage has focused on the more favourable aspects of the guidelines.

The Health Service has issued the first guidance on how to treat ME sufferers after being urged to bring the condition 'out of the wilderness'.It aims to redress years of prejudice against those with chronic fatigue syndrome - the term by which ME is now often known - who were told the condition was 'all in the mind'.

The NHS guidelines instruct doctors not to tell patients to 'go to the gym' as this could make them worse.

Although those suffering from the condition can benefit from gentle exercise, they should not be coerced into it.

Family doctors are also advised to refer children with symptoms of the disorder to a paediatrician within six weeks.

The guidelines state that a diagnosis should be made within three months in children and four months in adults. 

 from The Daily Mail 23 Aug 2007

Andrew Dillon, the chief executive at Nice who was in charge of the guidelines, said: "The condition can cause debilitating symptoms, impacting significantly on the lives of those with ME, and their families and carers.

"Until now there have been uncertainties about the diagnosis and management of this condition.

"This new guideline will help health professionals make an accurate diagnosis, while considering other conditions that may be present."

Prof Richard Baker from the University of Leicester, who chaired the guideline development group, said: "Care for people with ME has varied widely, with some people feeling that their illness isn't recognised by the healthcare system.

"The publication of this ME guideline is an important opportunity to change the current situation for the better, helping healthcare professionals and individuals by providing clear advice on how best to manage this disabling condition."

Action for ME, a charity for victims, said the guidelines could be a "landmark in the mainstreaming of ME as a legitimate illness", provided that the medical establishment pays attention to them.

from The Telegraph 23 Aug 2007

Sufferers and patient groups welcome the patient centred focus of the guidelines but there are still flaws in the guidelines (which had to be delayed from publication as the original draft faced fierce criticism from the patient lobby and many CFS/ME experts).

AFME (Action for M.E.) welcome the new drive to improve services for sufferers and recognise the importance of building a strong working relationship with the NHS. However, they also recognise some of the failings of the new guidelines and crucial aspects needed for this iniative to be successful (I've edited a few paragraphs out to keep it succinct for you):

Guideline flaws
The Guidelines are still influenced by the history of research in this area, which has produced findings that can not be generalised to all people with M.E. and which therefore once again place an over-emphasis on CBT and GET. ...

Two-year review
These guidelines have a two year lifespan before they are reviewed, unless there are significant developments beforehand. Action for M.E. hopes that the research on the patient-centred and patient-developed model of management – pacing - will be available then and this research would provide a counterbalance to the over-reliance on CBT and GET.

Greater investment
The potential for the NICE guidelines to improve practice can only be fully realised if services for people with M.E. are fully funded and we will campaign energetically for a greater level of investment, particularly in those areas that pioneer new models of service delivery that address the position of children and the most severely affected. ...
 
We have campaigned and will be campaigning strenuously in future for massively greater investment in bio-medical research into the aetiology and pathogenesis of M.E. as a way of finding more effective treatments. It is only through greater research that significant improvements in the outlook for people with M.E. can be made.

from AFME news 22 Aug 2007

The ME Association is yet to issue their response to the new guidelines publication. 

They were highly critical of the first draft not least for "its emphasis on CBT and graded exercise as therapies of first choice" (which I would agree with).  As these elements remain in the finalised guidelines it will be interesting to hear their reaction.

It seems the new guidelines are a mixed blessing, both for sufferers and for GP's.

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?