Abysmally low funding of ME/CFS research is targeted by patients, not researchers who try their best

Khaly Castle wrote:

Posting this for D.Y.. His comments:

"I have great respect for Amy Dockser Marcus as a journalist and am grateful for her interest, and that of the Wall Street Journal, in issues regarding ME/CFS and the retrovirus XMRV. However, this latest article is seriously flawed.

The basic premise of this article - that patients are pushing for faster research and impatient with the normal scientific process - is fallacious, and unfortunately is a complete distortion of what has really been going on.

The reality is that patients haven't been pressuring anyone to make researchers "work faster", they have been pressuring government agencies for more funding of high quality research that is faithful to the scientific method.

The main agency in charge of funding extramural research is the NIH, for which Dr. Le Grice works. Some months ago there was a grassroots patient initiative in response to the abysmally low funding ME/CFS research has received from the NIH for over two decades. In the light of the enormous potential significance of the XMRV/MRV findings by WPI, NCI, Cleveland Clinic, FDA and NIH scientists, it seemed all the more obscene that NIH funding for CFS continues to trail that for conditions like hay fever and erectile dysfunction. Patients during this brief initiative were emailing, calling, or faxing the offices of the director of the NIH (Dr. Francis Collins) and one or two other government health officials.

Dr. Le Grice is reported to have complained to a patient during the CFSAC meeting at that time that he didn't need Francis Collins calling him up asking what was going on. He raised the same points then - that patients just didn't understand that they were (somehow) slowing down his research by forcing him to answer such phone calls or emails. This is an absurd argument, even on its face, and an obvious example of institutional spin.

Neither Dr. Le Grice nor any other researcher was targeted by that patient campaign, and if he was contacted by Dr. Collins or other officials one wonders what the reason could have been, as patients did not ask to speed up existing research, but to increase funding of new research - not to harass any scientists, but to pressure government officials to finally give this disease, and a potentially causative pathogen, the funding they deserve.

That campaign ended soon afterward and there hasn't been an organized one since; so why is Dr. Le Grice's complaint being featured now, months later, on the front page of the WSJ, as if it was (1) still relevant and (2) accurate to begin with?

I urge Ms. Dockser-Marcus and other journalists who want to report on ME/CFS patient advocacy efforts and concerns to engage with a broader range of patients, most of whom carry out what advocacy they can over the internet; many can be found by browsing patient blogs, forums, and activist Facebook pages.

Without such input, a journalist cannot get an accurate picture of what is really happening, nor of its proper historical context.

Among other things, patients and their families have been clamoring for funding for the WPI, which has had several grant applications inexplicably rejected by an NIH grant review panel (which, by the way, includes a number of dentists and psychologists with no training in molecular biology, immunology or virology); without such funding, patients with limited resources have been struggling to scrape together relatively small sums of money for the WPI themselves.

In this case and for ME/CFS research in general, the problem isn't one of science being prevented from taking its own time, it's one of science being prevented from taking place at ALL. In direct contradiction to the theme of this article, it is the patients who are the ones fighting - all too often against government resistance - to give scientists a chance to research this disease.

The terrible underfunding of ME/CFS research, including the bizarre dismissal of WPI grant applications, is itself a scandal worthy of a front page article in the WSJ."