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.
