The Disturbing Fightback against NICE (cont.)

Below is the text of the email I sent to Scienenorway.no. It has not yet been published.

Sir/Madam,

I take issue with the recent article by Live Landmark on ME/CFS, which appeared in sciencenorway.no ( The British guideline for CFS/ME is the result of activism, not research Wed, 1 Dec).

There are far too many inaccuracies in this piece to list, so I will concentrate on the two most staggering:

‘As a result, guidelines for diseases or illnesses should therefore not be based on reports of experience. Such anecdotal reports are inappropriate for medical policy, and not consistent with modern health practice.’

The author here is stating that guidelines for disease should ignore patient feedback – EVEN in the case of harm. If it were up to the author, patients would still therefore be receiving drugs that passed clinical trials, but caused harm in the community. These include Thalidomide, Viox, Voltarol to name a few. You could extend her argument to include more extreme medical procedures or even agricultural chemicals that were considered safe until put into widespread practice. This is the most dangerous thing I have read by a so called ‘scientist in a long time.

Secondly, she says the guidelines were arrived at by a committee composed of mostly ME patients, rather than scientific review. This is absolute nonsense. There was a three year review of all scientific studies available in the field, before recommendations were made to the committee. She also says that:

‘several randomized controlled trials have been performed on thousands of patients with CFS/ME. The studies, and the systematic reviews, show that the treatments have an effect and no serious side effects have been reported.’

Over 250 such studies were included in the evidence review, and every single one of them was graded as either ‘low quality’ or ‘very low quality’ by an independent scientific review panel.

The author has ignored that these studies have been discredited and has continued to cite them as scientific evidence. She has ignored reported harms from the community because there were no reported harms in the (discredited) trials which focussed on only mildly ill patients. She has perpetuated myths that the  ME community base their views on ‘beliefs’ and unscientific practices, which is patently the opposite of the truth, as has been made clear by this entire episode.

I found this article offensive, and it’s content dangerous and outdated.  In short, this in an unscientific, prejudiced rant that refuses to accept the outcome of an important and thorough scientific review.

I ask that sciencenorway.no prints my objections or considers distancing themselves from the author, who states herself in her conflict of interest section that she works for a company who provide ( presumably for a profit) treatments which have been found to be dangerous by the new guidelines. The wellbeing of  many Norwegian patients may depend on embracing some balance in this debate.

Yours Sincerely,

Paul Mc Daid

@Paulthedaid

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