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.
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.
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).