Always playing the underdog, both the victim and hero, despite being neither, is a standard propaganda technique.
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Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.
The task of totalling up the funding and income for research, books, kingdom-related stuff of all these bps gravy trainers has always been something that needed to be done. And seems to be even more pertinent now. It feels their classic darvo.
Of course it seems that it is the lightning process Garner is trying to push? with lines that seem often very familiar to things that came directly from Parker eg his 'stormy' powerpoint video which seemed a bit angry and was released just after the new guidelines?, which makes things somewhat simpler as it has been very commercial for years and works on a pretty pyramidy model etc?
Oh and PS as far as I'm aware then anyone who works for a University is required to fill out certain financial and (relationship based) conflict of interest forms every year (and keep these up to date if anything changes). I believe these include and potentially go as far as declaring interests those in close relationships might have financially (such as working for a company or shares) that could affect eg ones ability to appear partisan if for example they were on a committee to decide a bid or provider etc. ?
It might be worth someone looking into this and other areas bps / lp (and why not nlp and anything similar whilst we are at it) etc people are employed etc that would be requiring such declarations and upfrontness etc. ?
When I'm too tired to do anything productive, the Garner thread can always be relied on for a bit of a laugh.
The MEA must be feeling that they can't do anything right. They are seemingly attempting to cosy up to the rehabilitation brigade and play nice with the establishment, but get flak from people with ME/CFS. And they are still are subjected to allegations of keeping people sick in order to get donations.
"also applies to crowdfunded individuals" - that's you @dave30th. Oh yes, sure, you say that you want to retire, but actually you are keeping all the people of the world with ME/CFS sick, so that they continue to fund your lifestyle of luxury.
I actually feel a bit sorry for the UK MEA, getting mentioned by name in that paper that Garner quotes (I'm not sure what paper that is.)
("In order to secure donations, patient charities and affiliated researchers emphasise that conditions such as fibromyalgia have no cure (see Pathirana et al, 2017). Donations fund (almost exclusively) pharmaceutical research so that "one day we hope that we might discover a diagnostic marker and effective treatments" (The ME Association, 2024.) It therefore makes sense for such organisations to assert that "getting better" or "recovering" from fibromyalgia is rare and chronicity is the more probably trajectory (Shepherd, 2021).
The MEA must be feeling that they can't do anything right. They are seemingly attempting to cosy up to the rehabilitation brigade and play nice with the establishment, but get flak from people with ME/CFS. And they are still are subjected to allegations of keeping people sick in order to get donations.
Peter T
Senior Member (Voting Rights)
I wouldn’t ascribe any ill will or greed to the MEA and in terms of finances they have always acted in such a way as to maximise the percentage of donations that go to end products and end users, the trustees doing a tremendous amount for little or no financial return. Indeed in the posts here it should not take too long to find suggestions that they should be spending more money on organisational matters such as employing a well paid chief executive. Garner’s specifically naming the MEA is particularly galling as with our recent concerns about the previous chair articulating any criticism was made harder in the light of his decades of selfless hard work for little or no financial return.
I suspect also that our current concerns about the charity’s seeming uncritical support of those pushing unevidenced rehabilitation relates to their long standing approach that being on good terms with decision makers makes it easier to achieve change, which arguably bore fruit in the most recent NICE Guidelines review actually happening at all. This has meant that the MEA has always sought to minimise conflict which has provoked debate amongst the larger ME community, some wanting them to be more confrontational. But this does create the irony that Garner accuses the Association of promoting disability, very much Wessely’s model of social contagion, at a time when we are concerned about their support for advocates of unevidenced rehabilitation.
Obviously Garner is in a fantasy world if he believes that people with ME/CFS would choose such a limited life because of any charity’s information output or for sickness benefit. Given Garner sought out information on Long Covid and ME/CFS in the early stages of his Covid recovery surely he is proof that such information does not create ‘chronicity’ given his self reporting indicates he was upping his activity levels well before his encounter with the will to wellness propaganda.
Yeah, I saw. I responded to him here:
Not to mention very nasty and highly defamatory.
I think there is a long-standing almost personal level issue from Phil Parker towards the MEA due to the many raps that he had from the Advertising Standards Association and then the guideline explicitly, and very correctly, including the line stating the Lightning process is not recommended.
Coercion and showing of public displeasure seem to be a key part of the tactics of that industry/organisation as a warning to others who might simply be saying it how it is, science etc.
Charles was brave enough to rightly have to say it how it is to keep patients safe. So it is I think an ongoing whatever word we want to use for it.
So I would separate it as either just unlucky that it is this weeks prompt sheet for Garner on his tweeting or opportunistic if they have noticed there is lots of other stuff on.
Utsikt
Senior Member (Voting Rights)
PG has changed his profil pic on xitter and shared a page with this message:
www.ive-recovered.com
Some quotes from the page:
Chronic Illness Recovery Day – July 13th | Recovered — Recovered
Join Chronic Illness Recovery Day on July 13th. Celebrate recoveries, thank supporters, and share hope with our badge, stories, and community.
www.ive-recovered.com
Some quotes from the page:
I have no idea who this group are. They have a facebook group with 28 members. The admin is a Katy McGhie that according to her profile is a product manager at a company called «Reframe Cancer» (I don’t really understand what they do).
Peter T
Senior Member (Voting Rights)
PG has changed his profil pic on xitter and shared a page with this message:
Chronic Illness Recovery Day – July 13th | Recovered — Recovered
Join Chronic Illness Recovery Day on July 13th. Celebrate recoveries, thank supporters, and share hope with our badge, stories, and community.
Some quotes from the page:
I have no idea who this group are. They have a facebook group with 28 members. The admin is a Katy McGhie that according to her profile is a product manager at a company called «Reframe Cancer» (I don’t really understand what they do).
The site shares links to individual practitioners or groups that have helped people on their path to recovery:
Which includes:
Mind-Body Reconnection
Mickel Therapy
Health Coaching
Nutritional Therapy
Somatic and Trauma-Informed Therapies
Brain Retraining /Neuroplasticity Approaches
Integrated Multidisciplinary Clinics
So with thirteen links under these headlines that gives perhaps up to half of the membership there.
Peter T
Senior Member (Voting Rights)
A good sales pitch that there is ‘no single prescription for getting better’, as if one doesn’t work then keep trying others till you find the right one for you. This also maximises the chances of one at least cooccurring with any spontaneous recovery or with periods of remission.
rvallee
Senior Member (Voting Rights)
Wessely was lying about that in the late 80s. And pretty much the whole time, no matter how completely ridiculous it is. Makes no difference. Nothing new about this. But it doesn't need to be new, it just has to work.
Somehow nonsense like this works. Not much different than why QAnon got so big. People will believe anything out of the culture they belong to. Just like so many want to believe that COVID has nothing to do with the increase in disability, no matter how obvious it is. They'd rather believe complete lies like how the secondary benefits of easily milking the social safety net encourages people to not bother working because you can live a comfortable middle class lifestyle on it.
It's insane, but that never stopped anyone before.
rvallee
Senior Member (Voting Rights)
Yup. And actually this is very important, because punching down always looks bad. So they pretend that they're actually punching up against us 'elites', or whatever BS they want believe. Bullies need that cover, or their violence looks repulsive.
Punching down while pretending to be punching up is likely a top 5 all-time classic human behavior. It just never goes out of fashion, always works.
rvallee
Senior Member (Voting Rights)
In the Garner emails lobbying the Canadian COVID guideline program, he made it clear he doesn't care about one program or another. He promoted several in there as being equal, he doesn't seem to have any particular interest toward one or the other. As long as it's couched in mind-body woo language it's fine.
Which is of course why the alternative medicine and wellness industries will adopt it in full as time passes, with medicine opening the door wide to them. But those won't have power behind it, so the quacks will pretend like it's not happening, because it still needs the magical ingredient of being blessed by an evidence-based medicine priest. Of course the general public doesn't care about that, they'll simply see how alternative medicine and real medicine speak the same language, and conclude that there is no real difference between the two. So much fun to have with unintended consequences.