Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

One e-letter that has been submitted.

 

Here are all the current tweets linking to the paper:

No quote tweets for those three yet

Others

 

Thanks! When the best you’ve got is an LP practitioner and Garner, you’re sadly wanting for scientific acumen. I hope this is quickly ignored

 

I don't mean to blame Charles—he is a very valued member of the community. And it's probably not his job to do social media comms. But I hope he recognises that their strategy does a disservice to his commentary.

 

I just checked Michael Sharpe's account.
He retweeted the Garner tweet and also tweeted a link to the Guardian article.

 

We were meant to have ForwardME now as a unified voice (when I was in MERC PAG and was involved with their meetings, we spoke about their being more proactive and quicker off the mark). Now they've gone silent again and their subpar website hasn't been updated for the best part of a year.

 

Yes, don't want to go too far off topic, but one more comment: We tried to get them to use Slack to coordinate advocacy and the type of response you'd want to see today. We failed miserably.

 

White et al. are being misleading when they say graded exercise therapy is symptom dependent.

Here are some extracts from the PACE Trial manual Peter White wrote himself:

This contrasts with the protocol in the PACE Trial [4] where what participants are asked to do is determined by “their planned physical activity, and not their symptoms” (p.20); similarly, “a central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback” (p.51) and “if the participant reports an increase in fatigue as a response to a new level of exercise, they should be encouraged to remain at the same level for an extra week or more” (p.66). The approach in the PACE Trial could be described as inflexible and prescriptive, attributes which Gladwell et al. describe as lowering quality [1].

(taken from a published letter of mine: https://www.researchgate.net/public..._in_CFSME_The_need_for_further_investigations)

 

Also published in the Evening Standard and The Independent.

--

Another article but by a different author, Helen McArdle:
'Flawed and harmful': Scientists blast ban on exercise therapy for chronic fatigue

 

There must be a press release somewhere. It would be interesting to see it.

 

What kind of reporting is this? It just parrots Garner and snippets from the opinion piece with no context or analysis. Troglodytic journalism

 

Which is why Tom is likely right to suspect there is a press release somewhere.

 

So we are back to ME being called Chronic Fatigue Syndrome all over the national press. And the PACE researchers and all their colleagues/propagandists calling the shots in the national press, controlling the narrative. These articles are harmful, damaging us. What the hell has changed. This may as well be 1996 (Joint Colleges Report), or 2002 (CMOs Working Group Report) or 2011 (PACE) ..... misinformation about our disease all over the UK press.

 

The Standard and Independent articles are by https://twitter.com/ellapickover , Health Correspondent for PA Media..

 

Utterly heartbreaking.
It's hard to find the energy to begin the fight back yet again. Thanks to those who are planning to do this. Would Sean O'Neill be a possible contact? I see he attended a Forward ME meeting fairly recently. I'll try to add a link to this.

edit: https://www.meresearch.org.uk/wp-co...-ME-Minutes-Meeting-09-September-02.10.20.pdf

"2. Sean O’Neill, Chief Reporter to the Times was also welcomed. He explained that he was going to talk about the media in general, how he thought it worked and the best way to use it.
l People tend to make the mistake of seeing the media as one monolithic organisation. The reality was that, although it had many common features, it is driven and riven by competition. Everybody wanted their own story, seeking something new, unusual, shocking, powerful human story or preferably a scandal!
l Entry into the media was not just about transmitting a message that was important, expecting it to be picked up and responded to. It very rarely worked. Engagement with the journalist with an interest in the subject was essential. Contacts and personal initiative and connections in order to find the right person to take on the story were necessary.
l The right timing was also important. Timing could be upset by events, such as a major disaster which would prevent other news items from being reported. He suggested that there should be a plan but there should also be a plans B and C"

edit 2: there was a later discussion with Sean on how to handle the SMC. He felt they could be ignored because their influence was diminishing.
It's hard to see that today.

 

It is interesting to see that the title was changed from “Eight major errors (…)” to merely “Anomalies (…)”.

It is also worth noting that Peter White wrote the paper alone and the other authors only chipped in with comments (which I doubt were more than simple approval):

Peer review took more than 7 months:

 

They have too much to lose. Im hoping there will be responses from reputable sources, though i’m not incredibly optimistic

 

I would speculate this is especially true for the FND sycophants, who I highly doubt were pouring over the literature.