Friday 30 April 2010

DENYING A DISEASE WHILST RESEARCH IS EVOLVING LEAVES PATIENTS WITHOUT TREATMENT

The controversies surrounding Lyme Disease and ME/CFS are both paralleling each other in not dissimilar ways. This leaves thousands of patients struggling with Chronic illness the World over whilst a handful of people have control of their disease refusing to listen to all the emerging science but sticking to the same old biased views.

If you like me have Arthritis, Fatigue, Muscle weakness, Peripheral Neuropathies or like others Neurological illness and have been diagnosed with ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Rheumatoid Arthritis, Juvenile Rheumatoid Arthritis, Lyme Disease, MS, MN, ALS and the list goes on then click into the following links and read the presentations.

The first is Pat Smith speaking on the subject of Lyme Disease taken from the CALDA blog. Pat is presenting to the Institute of Medicine of the National Academies. The subject Lyme Disease the state of the science hearing.

Reading the list of speakers makes those of us knowledgeable about this illness laugh, if it wasn't so tragic, not one person speaking out from an alternative view, that of ILADS. Pat says it so well. Thank you Pat for all you do fighting the ignorance and denial of Lyme Disease which leaves so many suffering when treatments that can help are denied because those with power choose to close their minds to the emerging science.

Whittmore Petterson Institute Testimony of Annette Whittemore to CFSAC April 25th 2010

Thank you Annette for all your work in fighting for patients with ME/CFS despite our governments efforts to marginalise this terrible illness.

One day the truth will out as science finally catches up with the experiences of patients but until then doctors and researchers and those holding the purse must have an open mind.

Meanwhile as patients we need to get informed, long gone are the days when Doctor knows best, we need to steer our own way through these illnesses with the guidance of doctors prepared to listen and help us.

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