The article Professor Stephen Holgate: UK has “dream team” for Grand Challenge has raised significant concerns in the patient community. As managing editor, I would like to take this opportunity to clear a few things up:
1) The article is not from Holgate, but from a longtime, British writer for #MEAction who has written over 30 articles for this community. I know her personally and she is a PWME. I stand by her right to protect her identity, due to the prejudices PWME are subjected to every day; however, she will have a pseduonym from now on. All of her articles are now identified with this pseudonym.
2) #MEAction is unfortunately the default for anonymous authors; this was the case before I became editor two weeks ago. This has caused some to believe that this article represents the views of #MEAction as a whole, which is not the case. We are ending this practice effective immediately and are drafting a revised editorial policy. As of this piece, where we use the author name #MEAction, it will represent the views of the organization unless otherwise explicitly stated. (This does not apply retroactively!)
3) Some have commented that the article makes #MEAction appear pro-PACE. Here is a short list of some of the articles and petitions we have written that are anti-PACE:
Please note: several of these are written by the author of this piece, and all are from April and March of this year alone. Additionally, a year ago, MEAction launched one of the biggest petitions ever generated by this community asking for a reassessment of the PACE trial and retraction of key claims. It was delivered a little over a month ago, and was covered in the Wall Street Journal.
4) We recognize that the arguments and debate presented here represent PWME’s worry about patients being harmed by ‘another PACE’, and deeply regret the frustration and upset that this has caused.
5) We do not think it is wise to remove the article, especially with this addendum attached. That the Grand Challenge is moving forward is important news for the ME community. Moreover, we would not want others’ comments regarding this article to be swept under the rug. The article will stay as it is, with debate intact.
6) We welcome contributions from all members of the community and would especially welcome a deeper analysis of the CMRC and concerns about the organization and/or the Grand Challenge. If you are interested in writing with us, you can submit a piece here http://stgmeaction.wpengine.com/
Jaime, Managing Editor