Sunday, November 28, 2010



Frustrated by the care at Barts, O’Grady made an appointment with a rheumatologist at a different hospital, who prescribed anti-inflammatories to treat the pain in her back and neck, which proved helpful. When she had given her Barts doctor the same list of rheumatologic symptoms, “he looked bored, said nothing and started cleaning his fingernails,” she recalls. “Another doctor claimed they didn’t need to run many tests on ME/CFS patients because “they would know the results simply by looking at the patients.”

For more information on the protest:

Raygent » Biomarkers and Blood Screening Tests: GenProbe (GPRO) and Genzyme(GENZ)

Raygent » Biomarkers and Blood Screening Tests: GenProbe (GPRO) and Genzyme(GENZ)

Blood Supply Screening Test-XMRV

XMRV is a retrovirus that is linked to chronic fatigue syndrome and there is concern that millions are infected. If XMRV can be transmitted through sexually or through transfusions there may be a need to protect the blood supply with a screening test similar to current test for HIV and hepatitis. Three companies are working on a test: Abbott Labs (ABT), GenProbe (GPRO) and Roche Molecular Diagnostics. GenProbe is a leader in blood screening with their Tigris diagnostic system that has 2009 revenues of $450M of which more than 50% are for blood screening.GenProbe is partnered with Novartis (NVS) and is developing a next generation blood screening system called Panther.

Next month on Dec 14-15 the FDA Blood Products Advisory Committee will feature scientific data and research regarding MLV-related (MLV-murine leukemia virus) Human Retroviruses such as XMRV. Recently the National Cancer Institute reported on a test that discriminates between mouse retroviruses and XMRV.

Blood Products Advisory Committee > December 14-15, 2010: Blood Products Advisory Committee Meeting Draft Agenda

Friday, November 19, 2010

Minutes of the All Party Parliamentary Group on ME, 9 November 2010 | ME Association

Minutes of the All Party Parliamentary Group on ME, 9 November 2010 | ME Association

Whole page is worth reading, at least we are being debated...

"Concerns were raised about the delegation of responsibility from central Government to local care commissioners which has led to wide variations across England in the quantity and quality of specialist health care provided to M.E. patients. Children with M.E. and the severely affected are particularly badly provided for by the NHS in most areas."

Sunday, November 14, 2010

Why are we banned from donating blood if we have CFS/ME?

11 November 2010

Index Heading: Health and Wellbeing

Mary Scanlon (Highlands and Islands) (Con): To ask the Scottish Executive
what evidence supports the banning of people with myalgic encephalomyelitis
from giving blood.

Ms Shona Robison :

Following a recommendation in July 2010 by UK Blood Services Standing
Advisory Committee on the Care and Selection of Donors and the Joint
Professional Advisory Committee (JPAC), from 1 November 2010 across the UK,
those with a history of myalgic encephalomyelitis/chronic fatigue syndrome
(ME-CFS) are permanently deferred from donating blood for the protection of
their own health. This decision was made to bring the donor deferral
criteria for those in this group into line with those with other relapsing
conditions, such as multiple sclerosis.