United Kingdom: Science Media Centre (including Fiona Fox)

Don't forget that Simon Wessely was appointed to the board of Trustees of the SMC.

 

What an a*se-licking organisation the SMC is! Real professional journalists should boycott it.

 

I think "last stand" may be nearer the mark.

 

And I think it probably signifies some panic amongst the BSP crowd .

 

Well it's not exactly factual for one thing.

 

Good point. Fibsheet, maybe.

 

The blatant bias is so revealing! In a news media outlet! I really hope the SMC get their comeuppance in due course.

 

Just wanted to say that rejection of PACE is not a guarantee of complete rejection of GET/CBT for ME/CFS.

Healthwise, which provides medical content for millions of Americans, has rejected PACE. However, Healthwise still points to Cochrane, unnamed clinical experts, and the assertion that GET/CBT remains beneficial for some patients to continue recommending GET/CBT. To be fair, Healthwise has deemphasized GET/CBT. But not abandoned the treatments.

Googling has shown me Healthwise has a number of psychosomatic medicine specialists on staff as content reviewers. Which could account for their reluctance to completely drop GET/CBT, even after abandoning PACE as unreliable.

I don't want to take this thread off track, but even if the Science Media Centre does abandon PACE, it doesn't necessarily mean they will completely abandon GET/CBT. Healthwise has shown there is a fallback position.

 

Maybe its a misprint by the SMC and its supposed to be a fuckedsheet, as in, "we are fucked".

 

If you look really, really closely at the treatment section of the SMC would-we-say-factsheet, you’ll see that medical care has a teeny tiny role:

Yep, that’s it, sandwiched between four meaty, multi-sentence bullet points on CBT and GET and one on how pacing (sic) doesn’t work (sic).


It’s nice to know medical care has a role, no? It was good that they minimised it, though, lest the media mention sleep or orthostatic intolerance or gastroparesis or bladder dysfunction or…

 

Yes, I agree, it’s very much a process.

If I may add, I feel it’s about celebrating one victory at a time, while staying focused on the long term goal. It’s too easy to get distracted, and invest our limited energy into dead-end debates. We must remain vigilant, and stay the course, if we want to win. We are fighting against established corporations and government agencies, who are well connected and employ healthy people (whose motives are in direct conflict with ours).

 

I think it’s important not to get sidetracked by the many points in this piece. The strength of the PACE crew's strategy is that they tell a simple narrative which is easy for media to regurgitate – GET and CBT are effective, patients reject psych, some patients are meanies.

We need to tell the very simple story back that GET and CBT are not effective, referring to their own research/reanalyses thereof, and papers like Collin & Crawley 2017 https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3 and Crawley et al 2013 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/

In the latter, Crawley, Collin, White & co report a “poor outcome in physical function in our study” of 834 patients attending six specialist CFS/ME centres in England, namely, a difference of just 4.4 points on the SF36 physical function scale. (The smallest increase or decrese an individual can record on this scale is 5 points.)

In the same study, just 25% reached their criteria for clinical useful improvement on both fatigue and physical function scales, with those criteria being >2 on the CFQ and >11 on the SF36 PF. (It’s reported as 14% in the original paper, but corrected later to 25%.)

What’s more, they explain that “our analyses suggested that patients who received activity management did better than those who received CBT and/or GET”.

 

No takers yet!
https://twitter.com/user/status/976501278644850689


https://twitter.com/user/status/976576418132975618

 

Well i assume the 'trial design specialists' would include Wessely & his co author, they wrote a book on 'clinical trials in psychiatry or something. Although whenever I've seen him talk about that book he always says "i wrote a book" rather than that he co authored it. Clearly considers himself an expert on trial design. Just cos you wrote a book doesn't mean that what your wrote stands up to science. Gwyneth Paltrow has written several I believe.

my bold.
Yes i must say i do feel pretty f'ckd reading this constant stream of propaganda bilge churned out by these people. Dreading the sunday papers

 

@Robert 1973 you are a legend

 

Now thats clever

 

Re the 'low impact journal' bit, I'm sure i read an article not long ago about journal prestige not being linked to research quality. but i cant find it. Cant anyone else recall it?

This one is old & i cant read the full article w/out a subscription, but the recent article was along the same lines http://www.bmj.com/content/314/7079/497.1.full

Just thought if we could find that article, i sure it was published somehwere credible, someone could tweet it as part of the response to the 'fibsheet'.

ETA this one might also be an answer for that particular 'it wasnt in a prestigious journal therefore not worth listening to' nonsense... do you think it's any good @Jonathan Edwards? https://www.nature.com/news/beat-it...te-turns-against-controversial-metric-1.20224

 

I think that's true, but as far as the newspapers etc go, we need to counter with a better story, and that isn't the math/science because the average reader response would be to glaze over.

We need the story of PACE as a medical health scandal to capture attention in the short term (and a breakthrough that is compelling for the general reader in pointing to ME being biomedical in the longer term) to really shift the narrative heard by the public.

I suspect that a debate in the House of Commons, if one can be secured, could be pivotal in shifting reporting into alignment with the actual facts, and turning the tide of opinion. A clip or two of MPs crying scandal, conflict of interest, and describing constituent horror stories on the evening news...

 

https://twitter.com/user/status/976526562182000640

 

Were you thinking of the one in this thread?
Prestigious Science Journals Struggle to Reach Even Average Reliability, Brembs 2018
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5826185/