Archive for the 'CampaignShout' Category

Thank You Ian Swales MP

Cross posted from my more public DizzySky blog where I talk about non art stuff, including ME/CFS. Whereas here I tend to advertise this chronicallyme blog amongst PWME only.

A thank you email I sent to Ian Swales MP in response to the Parliamentary debate on ME 2nd February 2011 as well as his EDM 778 on ME Research

9 February 2011

Dear Mr Swales

Although I am not one of your consituents I just wanted to write to thank you for your comments in the debate on ME/CFS on 2nd February 2011 as well as for EDM 778 on ME Research.

I was diagnosed with ME/CFS 4 years ago but have been ill with the condition for at least 6 years. Although I would now describe myself as a moderate sufferer I am still housebound, unable to work, unable to attend to basic self care needs and a long way from living what would be considered a normal productive life.

It took nearly 18 months of seeing GP’s in my practice before one gave the ME/CFS diagnosis which allowed me to address the downward spiralling of my health so that I could rest and begin to pace. Knowing the nature of the illness I had allowed me to make small gains in improvement but by that time I had lost my job leaving my husband to have to juggle caring for me and working full time. I know first hand the prejudice of many GP’s against ME/CFS. Their ignorance or arrogance devastated my health and my life.

I have managed to access medication privately from 2009 which has helped me regain some function and relieve some symptoms so long as I continue to carefully pace and manage my condition. This private medication came as a result of my own efforts and research. Although GP’s can prescribe this medication off licence for ME/CFS my practice would not allow it.

My GP is helpful and supportive but not proactive and not able to offer me much in the ways of NHS treatment other than attempting to manage symptoms and to offer CBT and GET (two management strategies I decline after bad experiences with local physio’s not understanding my illness and already having CBT skills I use day to day).

Whilst the Minister for Health Care Services, Paul Burstow, stated in the February 2nd debate that the NICE guidelines are merely guidelines, in practice they limit the options that GP’s may either be able or willing to explore.

The issues you raised in the debate are so important to me. Research, biomedical research, I think has to be the key to moving forward both in establishing diagnosis and treatments. There are already clinical markers that when considered together could diagnose ME but the NHS seems to want a single, inexpensive and uncomplicated test for what is a complex condition.

Being a ME/CFS patient I am well aware of the splintered and often angry responses to debate about ME/CFS and that for many it makes them wary of speaking up on behalf of sufferers. So I wanted to thank you for your efforts and to know they do not go unnoticed or unappreciated.

Where once I worked and was an upstanding citizen, now I sit at home waiting every day waiting to feel better, waiting for new treatments, waiting whilst life carries on without me as a significant part of it. I am invisible to the bigger world most of the time. My fear and anxiety is palpable that I may lose my DLA because of changes to an assessment process where my condition is already not a good fit for the prescribed tick boxes and scoring systems of benefits.

Day in day out I have to contend with my illness and make best efforts not to let debility worsen. Every minute of every day for at least 5 years I have been and felt ill. There is never a respite.

I do not have the energy or function available to fight to raise myself and others out of the plight we find ourselves in through no fault of our own. So when someone, like you, is willing to speak for me it means more than you can know.

Thank you

Rachel Groves

For those outside the UK where the BBC iplayer clip of the debate may not work there is a transcript of the debate.

If I can’t get any support from my own MP I may as well do my bit to encourage and thank those MP’s willing to stand and be counted with us PWME’s (Persons with ME).


MEA Response to Green Paper ‘Shaping the Future of Care’

I’ve just emailed The ME Association to offer my support for their response to the Green Paper ‘Shaping the Future of Care’. 

If you haven’t already signed the petition to lend your voice in opposition to this paper please take a moment to do so now

Image by Benefits & WorkAt the moment direct payments are made to successful applicants of carers on low incomes and sick/disabled persons with personal care and mobility needs.  This Green Paper seeks to change the system and give the funding to local authorities to adminster care and mobility needs. 

Except local authorities don’t have a good track record of adminstering other schemes and the services they would provide would not necessarily replace how people are able to use their payments currently.

You can read the MEA’s concerns in their response here and they are concerns I share.  So I wrote to them to lend my support and also to give some examples of how I rely on my DLA to help with a lot of things that Social Services couldn’t give me assistance with – so I effectively would lose my assistance from the government.

I would also give a huge thanks to Benefits and Work and their continuing efforts to rally support in opposing this Green Paper.  Without them many people would be unaware of the implications of these proposals and many groups would not be so actively engaging in the debate.


Dear Friends at The ME Association

I am writing to lend my support to your response to the Green Paper on ‘Shaping the Future of Care”,

I am a member of the ME Association.  I have ME and have been ill for 4 years. 

I am in receipt of DLA lower rate mobility and middle rate care awarded in October 2007 to October 2009.  I am in the process of re-applying for DLA as my award is coming to an end.  I am fortunate to have a supportive GP who added weight to my last application.

As someone with ME in receipt of DLA I support your response to the Green Paper and echo what you have said.

My husband works to support us both.  I do not earn a wage, I do not claim Incapacity Benefit or Jobseekers benefits.  I do a little part time self employment as an artist, working when I am able to, but my income from this is very small and would equate to working just a couple of hours each month in a conventional job. 

My DLA is my main source of income and means to support my personal care, mobility and medical needs.

I rely on my DLA to pay for many things for my care, mobility and medical needs which would not fall under the remit of service provision from Social Services. 

Here are some of the things things I rely on my DLA to pay for:

  • prescription medication (a yearly certificate)
  • over the counter medication
  • suppliments (eg. fibre suppliments, vitamins and energy suppliments) which help with symptoms
  • help with gardening as I am unable to do any myself
  • upkeep/maintenance of my wheelchair which I rely on when I have to go anywhere when I need to stand or walk for longer than a few minutes
  • help with fuel bills as I am virtually housebound, being sedentary and having trouble with temperature regulation due to ME
  • thermal clothing to help keep me warm as my mobility problems mean I am sat still for long periods and also for when I do go out in my wheelchair (assisted) during autumn and winter
  • help with broadband which allows me to stay in touch with family and friends which would otherwise be impossible due to my mobility problems and problems with communication over the phone and face to face
  • earplugs for noise sensivity
  • eye glasses which I require because ME affects my ability to focus when I am very ill
  • help with delivery for shopping as I am unable to go out to the shops and so rely on using online shopping and paying for postal delivery

I am delighted The ME Association wil be responding officially to the Green Paper and fully support your stance.


ME Aware Blog for ME/CFS Awareness 2009

International ME/CFS Awareness Day is 12 May with awareness events and campaigning throughout the month of May.

I’ve started a new blog ME Aware to collate all our blogging for ME/CFS Awareness this year at

As well as blogging I’ll be looking at other onine activities by individuals. So whether you blog, use your status updates on Facebook/Twitter/MySpace/etc, post pictures, photos or videos – drop by ME Aware blog and ask to be added to the participants list.

There are also a few new version of the badge ideal for profile pictures as well as links to badges from other sources.

ME/CFS Awareness

ME Association Survey for Brits

The ME Association is asking people with ME/CFS and their carers to complete a questionnaire on their symptoms, treatments and feelings about management of their condition.  They will be using the results to shape their recommendations to the Department of Health.

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

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. “

Your Blog for ME/CFS Awareness on 12 May 2008

ME/CFS AwarenessOn 12 May 2008 it will be International ME/CFS Awareness Day.

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:

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

ME/CFS Clinical Guidelines Skewed?

So remember my saying that new clincial guidelines here in the UK were a mixed blessing?

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?

Don’t Mess With Sick Notes

 More stress for people who are too sick to go to work.  Proposals to let a ‘specialist’ team decided if you’re too ill to work and to do their best to get you back asap.  I don’t think the patients interests are at the heart of this idea – it’s about money.

“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


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via
New stuff is added all the time.