• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Contributions & co-signatories to open letter, re: M.E. "death threats", by 6/7th Aug


Senior Member
Contributions and co-signatories to open letter, re: M.E. "death threats", by weekend 6/7th August 2011


I have started drafting an open letter to all publications which have covered the M.E. "death threats" story, following its appearance in the BMJ, 22 June 2011 and broadcast on the BBC Radio 4 "Today" programme on Friday 29 July 2011.

The tone is a non adversarial one, which suggests that the journalists wonder why these allegations have been made and what interests all parties have in any particular outcome, what success rates with orthodox and alternative treatments there have been with M.E. sufferers etc.

I am inviting any individual, or support group, from any country in the world, to suggest questions that should be put and to become co-sigatories if they wish (if we receive a massively unwieldy number, it would be groups only or "+ n individual co-signatories")

We may give the journalists a list of questions they should put, insist on straight answers from all sides and be prepared to dig a little deeper than they have done so far (we shall tell them where they might dig). We shall also recommend that, since a large proportion of patients and their familes, doctors and health care workers, may be frightened to speak out because of derision or bullying, they may need to shadow a real M.E. sufferer (we will provide them with one) or do a "reality test" undercover.

It would be unreasonable if they did not ask these questions but, at a later time, repeated a slur on a majority of M.E. sufferers.

Anyone wishing to contribute may

(1) send a question, or number of questions

(2) ask to be added to the co-signatories. (if you do not specifically ask to be added, you will not be named in the co-signatories)

to me at drjohngreensmith@mecommunitytrust.org

with "Contributions and co-signatories to open letter, re: M.E. "death threats" By weekend 6/7th August 2011" in the subject line
(You may copy & paste it from the subject line of this e-mail if it makes it easier for you)

I am planning to e-mail this open letter by this weekend, 6/7th August 2011, so please reply promptly but, at the same time, do not be too hasty or over-emotional (perhaps draft your questions and sleep on it, or at least take time to reflect?)

Co-signatories will either have to trust my editorial judgement, or we may have time for just one draft before we send but I am certainly not going to get involved in any kind of bickering, which would make these allegations a self-fulfilling prophecy.

Best wishes
Dr John H Greensmith
ME Community Trust.org


Senior Member
How about: "What is ME?"

Follow-up: "Have you read the ME International Consensus Criteria?"


Fine, thank you
Interesting idea! I often wonder why he is not put on the spot. I have PM'ed you (I started to write my questions in a post and then it occurred that it would be best if Prof. Wessely didn't have advanced notice of them - there is nothing to stop him reading about this project on Phoenix Rising, of course.

You might like to edit your first post to point that out if you agree, John!


Senior Member
I meant to put on my list of questions - do any of these "investigative" journalists know anything about their subject matter - ME blazoned across their headlines, or is this nothing to do with in-depth reporting ?


Senior Member
Sth Australia
We may give the journalists a list of questions they should put,

One question I'd like to see journalists asking is why hasnt police action been implicated for the death threats on Simon Wesselys life and the fear he is apparently living in? As a ME patient, I'd personaly like police action to be taken if that is going on, rather then implicate all of us. So my question is "why no law enforcement action has been taken when that is what many ME patients themselves want IF this is all going on?" That is the "normal" way people usually handle death threats and fear of ones life things.

(can ME patients themselves ask that those claims be investigated as it impacts on us all?)