A great example of advocacy that you can use

The following letter was written by a patient, and seasoned corporate marketing and communications specialist, and sent to Mr Colin Douglas, Director of Communications for the NHS in the UK.  We like it for several reasons:

  • It beautifully leverages the writer’s considerable professional experience in this area
  • It is targeted “high” in the organization, for maximum impact
  • The approach is both innovative and impactful.
  • You can use it in your advocacy initiatives.

We especially love the line referring to the over 73,000 reader ratings, giving an average of one out of 5 stars to the quality of the NHS “contamination” article.

“In all my years in Comms (communications), I have never seen this magnitude of reaction to an article placed on any public website”.

Heather Goodwin, who wrote the letter, has kindly offered to make it available to patients for their advocacy initiatives.   Here it is:

Dear Mr Douglas

You don’t know me from Adam, but I am a 26-year corporate marketer and communications specialist (ex-BT) who lost her career to ME/CFS in 2007.

As you would yourself in my position, I read assiduously any and all articles about my condition.

As one specialist to another, I thought I should bring this to your attention. In all my years in Comms, I have never seen this magnitude of reaction to an article placed on any public website. You may wish to take a look for yourself:


The issue behind this enormous reaction is one of constriction of the media on this subject, and a failure to report what is really going on.

While most of the US scientific and medical establishment, including the NIH and FDA, have now accepted that the cause for ME/CFS is biological, and there is a daily-increasing body of peer-reviewed published research results to back that up, the UK media is prevented from reporting it.

The reason for this is the person on the the UK Science Media Centre who has responsibility for acting as ‘gatekeeper’ for media releases on the subject of ME/CFS. He is Professor Simon Wessely of the Institute of Psychiatry at King’s College, London. It is on Professor Wessely’s theories that the NHS and NICE’s position (which is not the Government’s postion, interestingly) on ME/CFS is based.

Professor Wessely holds that ME/CFS is a psychosocial condition – that it is ‘all in the mind’.

Professor Wessely’s position is now embarrassingly out of date, but maintaining it keeps CBT and physical therapists in centres across the NHS in work. However, members of the British medical and research establishment are beginning to navigate a path around him to gain funding and to publicise their work.

Against this context, you may wish to ask yourself why four studies on the subject were released for publication by the UK SMC simultaneously, and why it was felt necessary to ‘interpret’ those four papers in a particular way that none of them had individually indicated. In my days in Comms, we called this ‘issue hijack’ – the appropriation and interpretation of information to further or support a specific viewpoint, the best example of which was possibly the ‘dodgy dossier’, based on which this country went to war.

Clearly, this is a subject which is highly political. However, 250,000 patients in the UK alone need someone, somewhere, to begin taking a stand on this. I am asking you to consider whether you would, could, or should be that person.

I am not asking you to simply take my word for anything I’ve said, but I would invite you to research the subject thoroughly before simply accepting releases of this nature and onward-publishing them.

Some links below will possibly give you an entree to the subject.

With kind regards and best wishes for the holiday season

Heather Goodwin

Informed comment and discussion on this story by noted US virologist, Vincent Racaniello:


and his very public retraction of his initial assessment of those articles based on the Temple summary


Statement by the Whittemore Peterson Institute on this story, which aimed to discredit their findings:


List of worldwide published and unpublished studies on XMRV where positive result was found:


List of Parliamentary questions and answers on the status of ME/CFS as a condition:


How to use this kind of material

1. If you specifically want to protest to the NHS about their re-publishing of the ‘contamination’ press release on their news site, you could forward this email as it is to Mr Douglas, saying that you are aware that Heather Goodwin has written the following email to him, and urging him to respond, as there are a lot of patients who are keen to know what his response will be.

2. You can cut and paste any part of the email text which fits your needs if you are writing to any of the media which published the ‘contamination’ story over Christmas and you are asking them to retract it. Use any position you hold, like ‘expert patient’ or ‘patient support group manager’ or put your current or prior professional title, eg ‘former retail manager’ so that the sender knows they are dealing with someone with a brain and some determination.

How to find out who to protest to

To find the right person, use Google – usually if you put in a job title, like ‘editor of the daily mail’ it will come up with a name, and then you just search on ’email address for name name, editor of the daily mail’ and sooner or later one of the results will include an email address (they will have written a paper or presented at a conference or something and given it out).

With thanks to Heather from our team at XMRV Global Action!



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