We stand at a critical juncture as two independent transatlantic ME/CFS battles rage. The first of these battles encompasses the imminent appointment of the chief of the Chronic Viral Diseases Branch of the CDC. The second of these encounters involves the UK ME/CFS blood ban. This blog entry will detail advocacy efforts aimed at reaping positive outcomes relating to these two events.
The Appointment of the Chief of the Chronic Viral Diseases Branch of the CDC
The CDC recently announced the job availability of the chief of the Chronic Viral Diseases Branch (CVDB) of their organisation. This position dictates the fiscal delegation of the largest annual CFS research budget within the US- $5 million. The chief of the CVDB is also responsible for the direction of future CFS research efforts and has the ability to focus on predominantly psychosomatic research or purely biological research. The influence of the individual fulfilling this CDC position is vast as Dr. Reeves tenure demonstrated. It is rumoured that the new chief of the CVDB will be selected within the coming weeks. The individual responsible for the selection is Dr. Steve Monroe. Dr. Monroe himself holds an outdated and CDC-typical CFS viewpoint. This is elicited by his CFS Central interview which can be found here: http://www.cfscentral.com/2010/08/sunday-monroe-5-am-final-final.html
Advocacy efforts, entailing an email campaign are focused on Dr. Monroe. This campaign involves ME/CFS patients informing Dr. Monroe that a suitable chief of the CVDB should believe strictly in the biological ME/CFS paradigm. The current caretaker chief of the CVDB, Dr. Unger, is a candidate for the permanent position and does not conform to the biological ME/CFS paradigm and is hence an unsuitable candidate.
The following is a brief letter that I wrote to Dr. Monroe. Feel free to copy and paste this letter and send it to him or to create your own unique letter.
Dear Dr. Monroe,
This letter concerns the imminent appointment of the Chief of the Chronic Viral Diseases Branch (CVDB) of the CDC. It would be inappropriate to appoint Dr. Unger to this role as a permanent chief or indeed in any further capacity. Dr. Unger has co-authored many papers with the previous chief of the CVDB, Dr. Reeves. His perspective of ME/CFS as a psychosomatic illness has heaped extensive damage upon ME/CFS patients due to this viewpoint and consequential studies focused around this paradigm. Dr. Unger’s co-authorship of these papers does not immediately align her into the psychosomatic school however it does associate her with this viewpoint. Dr. Unger has also recently stated unconditionally that ME/CFS is within the domain of a “psychosomatic disorder.” This qualification by Dr. Unger will incriminate the CDC if she eventuates as the CVDB chief.
The recent developments relating to XMRV have supported the in excess of 4000 papers discerning that ME/CFS is in fact a purely biological illness, distinct from any psychosomatic characteristics. We are currently in the midst of these paradigm shifting studies and Dr. Unger’s appointment would eventuate in a double-prong effect of halting biomedical progress in the ME/CFS realm in tandem with an embarrassing predicament for the CDC if XMRV is determined to be causative. The current research climate dictates that a new- fresh faced scientist should fill Dr. Reeves void to parallel the cutting edge, new discoveries and initiatives that are now peppering the ME/CFS arena worldwide. I urge you to avoid appointing Dr. Unger as chief of the CVDB, not only for the plethora of severely debilitated ME/CFS patients but also for the reputation of the CDC in posterity. Alongside millions of fellow ME/CFS patients, I keenly await your decision and I hope my words strongly resonate with you in your ultimate judgement.
The UK Blood ban
The UK recently announced that ME/CFS patients are banned from donating blood from the 1st of November 2010. This delayed albeit superficial ruling has the official purpose of preventing ME/CFS patients’ health deteriorating consequential of blood donation. The UK Department of Health has declared the motive of the blood ban to be a “precaution to protect the donor’s safety by ensuring their condition is not made worse by donating blood.” The probable blood bank contaminant- XMRV has not been listed as a motive behind the blood ban, despite many other countries recently banning ME/CFS blood donations for this precise reason. This epitomises the archaic and Orwellian UK ME/CFS paradigm.
The successful ‘Time for Action’ campaign that involved peppering certain NIH officials with emails, faxes and phone calls encouraging immediate action on ME/CFS has given rise to an equivalent UK campaign. This UK campaign is titled ‘Policy Change: NOW’ and runs for a period of two weeks, beginning on the 1st of November 2010. It has been purposely timed to coincide with a public demonstration at the UK Department of Health in London.
The following was not written by me but details the ‘UK Policy Change: Now’ campaign:
“The “UK POLICY CHANGE: NOW” campaign has just four simple steps or AIMs and taking part in our campaign is easy:
1. Address your email
2. Inform the campaign: Cc: firstname.lastname@example.org
3. Message: copy and paste our message
4. Start over: repeat these actions once each day.
Sample message: (adjust as necessary)
“Stop allowing policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Pledge to make a definitive policy change NOW, patients and their families are waiting.”
Jane Smith, Newcastle
Housebound and bed-bound since 1999
1) Andrew Lansley, Secretary of State for Health
2) Sally Davies, Chief Medical Officer at the Department of Health
3) John Savill, Chief Executive of the MRC
3) Sir John Savill, Chief Executive of the Medical Research council
Email: Linda.Willmott@headoffice.mrc.ac.uk (personal assistant’s name)
Telephone: +44 (0)20 7670 5155
Fax: +44 (0)20 7580 4369”
The Crux of this UK campaign is reiterated in this video:
The above two advocacy campaigns are not strictly for the corresponding countries residents. The UK and US are the two lynchpins concerning ME/CFS and it is therefore imperative for ME/CFS patients and advocates worldwide to involve themselves in these campaigns.