Monday, 26 September 2011

Some thoughts

3 & 1/2 years ago I was diagnosed with CFS.  This was after six months of the same symptoms followed by bog standard blood tests to see if anything obvious was causing them.  There is no diagnostic test for CFS - the diagnosis is made on symptoms alone!  My symptoms all closely followed a strange circular rash on the side of my hand/wrist which persisted for about 3 months.  It is my opinion therefore that my symptoms may be caused by Chronic Lyme Disease.  Because the NHS do not recognise CLD it therefore does not exist so I cannot have it, particularly as their test is next to useless, a test condemned by Lyme specialists all over the world!

'CFS' was a term coined by the medical profession as an alternative to 'ME'.  ME is considered by some to be a different condition altogether!!!  It probably is but nobody will ever know until there is some proper research done that everyone can agree on.

In the meantime, people like me are flailing around in a quagmire.  Our work lives are in the trash.  Our social lives are severely limited.  For some, their families are falling apart because of misunderstanding and suspicion. (that people may be putting this illness on!)  Sadly science and politics are inexplicably intertwined so any sign of proper help and treatment for sufferers is still just a dream!

It is so frustrating!