MEAction UK challenges removal of rapid response from JNNP website.

MEAction UK has sent the following letter to the BMJ Editor in Chief, the JNNP Editor in Chief the and the JNNP Editorial Office Team to request more information following the removal of our rapid response to the paper published in the JNNP this month.

We are disappointed that the JNNP decided to remove our Rapid Response to, “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis”.1  

In the email from your editorial office ‘inappropriate inflammatory language’ is cited as the reason for removing our Rapid Response.  However, our response was posted for several days and also edited without anyone in the editorial office considering it to be ‘inflammatory’.  In your terms and conditions you say that, ‘If only a line or two of an otherwise OK response is defamatory or extremely abusive, we may delete the line and post the rest.’2  As the original response was considered suitable to be published we find it surprising that editing wasn’t considered before removal.
It is also intimated in the online notice that our response fell foul of the ‘hostile or hateful speech’ clause.  This was not mentioned in the email to us and is a particularly egregious accusation in relation to a marginalised patient group who have repeatedly reported being gaslit by the medical establishment.

In a 2013 post, Sharon Davies, the rapid responses editor for the BMJ, said ‘we adhere strictly to our policy of not deleting rapid responses once we have posted them. The only exception is when we’re told to do so by lawyers.’3

Is it the case that you have been instructed to take this exceptional step by lawyers or under pressure from the authors of the paper and supporters, rather than ‘inflammatory language’? We would be very disappointed if the JNNP had given in to outside pressure and ask that you engage in a constructive dialogue with us to find a way to reinstate our response.  We intend to publish this response and any further correspondence unless you request that we do not.

Finally, we would like to thank the editorial team who originally posted our Rapid Response and prioritised debate and openness.


Denise Spreag
Janet Sylvester
Malcolm Bailey
– MEAction UK Trustees


3 thoughts on “MEAction UK challenges removal of rapid response from JNNP website.”

  1. Maybe these biased lobbyist medical researchers with their fragile egos would understand an ME patients illness more obje tively if they themselves or a family member suffered from severe ME. It becomes quite humbling then indeed and they would soon realize the error of their ways.
    Honestly, isn’t there enough gaslighting and censorship in this world already.
    I am an ME patient and nurse from Canada who knows 100% that graded exercise is NOT effective for our illness and can be HARMFUL to our condition. The UK seems to be slower than other countries “to come to the races”, Honestly!
    We’ve been in the gutter for decades with research lagging. Can we please have more compassion and respect for this terrible illness that has fallen through the cracks was too long.
    Have they not seen the movie Unrest? or read the book Osler’s Web??!!

    1. I agree with all of the above!
      Thanks for your courage and energy to stand up and be heard, and improve things.
      You are being heros. 🤗🤗

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