Monday, 6 December 2010


The above was published today in the Washington Post.

ME/CFS patients are no longer invisible, no longer silent. From their beds and wheelchairs, many disabled patients worked together to place the first-ever ME/CFS ad in The Washington Post.

The recent studies show that more research funding is needed to prevent the next mother, father, or child from becoming chronically ill with this devastating disease.

Time for the US and UK governments to take the following actions:

Provide more funding for biomedical ME/CFS research;

Develop a national research and clinical network, as recommended by the federal Chronic Fatigue Syndrome Advisory Committee;

Provide funding for XMRV/MLV clinical research in order to sustain momentum;

Protect the blood supply and explicitly prevent ME/CFS patients from donating blood;

Adopt the Canadian Consensus Criteria for diagnosis and research of ME/CFS;

Bring the Centers for Disease Control website in line with the recommendations of leading researchers and practicing physicians in the field of ME/CFS.

The above from ME/CFS World Wide Alliance here

Make sure you watch the Videos What about ME on the right of the above link.

Further press release here

So much of what is happening with ME/CFS denial parallels a similar situation with Lyme Disease denial and there are many patients who are now being found infected with both Lyme Disease and XMRV.


  1. Thank you Joanne for sharing this with all of us!

  2. Great AD and amazing Press Release. Thank you for grabbig this one. I hope the public and journalists are thunderstruck by this information that has been withheld from them, reasons unknown. At least now the media will get to the bottom of why no funding for CFS and this new retorivirus that they seem to believe does cause many cancers (breast, prostate) and other diseases.
    I'm not to happy with our government right now. My support group and I will be emailing the health organizations and asking what is going on and why are they hiding this from us. Thank you -