Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Hey @Solstice don’t feel obligated to read it all even if you feel better.

I have some stuff on so it might take me till Wednesday to finish sorting all the typos and large text blocks.

I think the background stuff I was trying to talk about is relevant to our problem of being seen as worthy for access to healthcare and how we fund finding out what this is but I didn’t include that conclusion here so may write a reply to myself including that if I can. But if not basically we’re near the sharp end of the national rich country divide and conquer tactics used to ration healthcare private and public but because this tactic is so effective, even among those effected it hard not to buy into this narrative. Collectively we’re not focused on all the others in different silos nationally and internationally that we could be in alliance with.

 

Already did, I amended my previous response. Also agree with this post btw. I think one of the most effective tools to deny support is pitting patient groups against each other. "Well, we could fund this research but we'd have to cut into that research". After that you just watch people fight each other instead of fighting the assholes that are creating this situation.

 

Umm

 

Yeah it certainly is.

But we’d be unwise I think, not to speak about this on our own terms, in favour of better outcomes for everyone.

I don’t think it’s a coincidence that those gatekeepers of our access to the essential material resources of life are choosing to have it both ways. Or to get in first. Successfully making sure such comparisons are made only on terms favourable the their agendas, ideology, and personal or political ambitions

Hoard at others expense, and then point the finger at the ‘have nots’ for daring to complain while there are ‘have nothings’ who aren’t around around to complain anymore. Or who are far away enough not to be heard. That’s a very intentional misdirection.

Why would any of us want for anything?
Why is anyone sick without care why is anyone dying of treatable conditions?
If not for those who have it all?

When any of us have M.E in a “rich country” and don’t have independent wealth as a buffer, still we are on average comparatively fortunate.

The leaders of our governments probably won’t force us -through threat of starvation- down a mine full of poisonous gas, or murder us -via the dept repayment they demand of the countries they extort cheap labour and raw materials from- by destabilising our economy and destroying chances of a functioning healthcare system.

But the ‘have it alls’ are still gonna let us starve to death because they won’t pay social security. They are still gonna incite hate crimes against us. Still gonna make sure everyone “productive”, “hardworking” and “motivated” will shun us. Since most people like to think of themselves this way, that means most people.

They will force us into humiliating self exposure, make us beg for what we need to live to live on. Then leave people with nothing. Cause those who can’t live up the economic plan to despair and die. They are also still gonna directly cause the the deaths of people with ME via a hostile hospital and medical system.

So the difference is an average, in terms of how difficult it is to survive disabled in different countries. It’s easier for lower income people on average in “a rich country” to get the basics for life.

But your life is still gonna be so lonely and harsh due to all the resentment and suspicion of disabled people that is ingrained in the rich countries culture, dependent as they on exploitation, built on it. In the end you might not even wanna fight. You might not be able to maintain your own sense of worth while you’re being told you’re worth nothing.

There is no reason why any of us has to suffer in any of these ways. Except that certain institutions are making sure that we do.

We are a horrible warning to the worker about what happens if you don’t manage somehow to fit your roll.

Got sick and injured at work? Too bad. You will be judged as less than from here on.

All of us are safe or none of us are. If we get into the good books on account of one diagnosis those with the power to help just gonna double down on it not being “cost effective” to treat or put the “focus on prevention”, in this case that won’t mean helping you stay well, but more focus on what you did wrong to become unwell, “individual responsibility”
And on and on forever reinforcing the system.

Whether or not they know it, those maintaining official documents of any kind that are used to place the focus on individual patient behaviour instead of on the healthcare provision obligation for private and public providers, are backing the same system that keeps people poor and sick, and protects the assets and wealth of the richest individuals.

 

I've had this logic used on me almost my entire life. Childhood diseases have visible signs and symptoms so couldn't be ignored or disbelieved. But once I reached puberty almost all my health problems became internal ones which rarely came with fevers that showed up on a thermometer. So I was assumed to be lazy and avoiding school, university, work, housework, working in the garden. When I did something good it was never good enough. And when I was sick and in pain that was assumed to be never real or never as bad as I said it was. I think constant disbelief is one of the most cruel parts of being ill.

 

Excellent analysis @CRG
I expect the first tier appeal (internal review by the organisation) will be knocked back/fail. However, the second tier is to the Information Commission (external) and I'd be interested to see their decision re disclosure. My "understanding" of "free and frank--" is that the intention is to allow (integral) consideration of a range of options [A to Z]; however, when a decision is made [e.g. "Z"] then the reasons that option was chosen are not protected from disclosure - except via another exception e.g. "legal advice".

 

Is Cochrane subject to freedom of information? Would the UK freedom of information laws apply in this situation or the Swedish?

Given the latest communication from Cochrane seems to contradict previous communications and on line information about this process would it be appropriate to start a freedom of information request relating to these inconsistencies, for example:

1. What are Cochrane’s processes in relation to assessing serious methodological problems in published reviews and harms arising from misinformation in published reviews? How is any decision to withdraw a published review made?
2. What was the decision process in leading to no longer having an update project manager?
3. What was the brief given to the IAG when it was established, how was its structure established, why were update ceased and what is its current structure?
4. Does the IAG have any role in advising on the status of the current 2019 flawed review and does it have any role in evaluating the previous conduct and processes relating to complaints and concerns about the 2019 review, given Cochrane have previous deflected any response on people’s concerns saying that these issues are to be dealt with by the IAG?
5. What was the thorough editorial scrutiny referred to in the recent email to ourselves used to justify not responding to any of our concerns? If this editorial scrutiny was in relation to the publication of the 2019 update, how did Cochrane decide that all the concerns raised since by various people/groups including ourselves could be disregarded?
6. etc

 

Out of curiosity With the FOI email trail from Atle and Karla what were the institutions/unis involved who were pushing for the independent arbitrator Guyatt’s wirding and confirmation of ‘only an affect if you not with no significance and vice versa’ to be cut to read differently etc?

are there any connections to Soares-Werner and the new Cochrane move to a Swedish uni and was that to do with their losing British or other funding and when did that happen etc?


No wonder they keep wanting to point onlookers to an entirely different report so they don’t look too hard at all this is what I think - it’s all very ‘look at the big aeroplane’

and PS I really do feel for the IAG I think the fact they are getting stitched up as a contact point despite never having worked on the report in question and that they can’t even reply saying ‘all that was done snd dusted three years before my time and I’ve no power or right to look into due process on anything or withdraw bad reports etc so goodness knows why they pointed for you to contact me’ says they might well be stitched up with something gagging them from replying but who knows.

A group for a different report who apparently are there for communication but might be banned or scared or have clauses preventing them from saying ‘nothing to do with me’ being pointed to isn’t a mistake it feels and so I do really feel for them if this has been strategically thought-through to land them in that situation etc

 

Cochrane aren’t beyond a subject access request. There are several individuals (including commenters above) about whom Cochrane staff might have committed some choice nuggets to email.

 

A way to put some pressure on Cochrane is to speak with its funders about the guideline and contemptuous behaviour of Cochrane towards patients.

 

I've been thinking about who we're talking too in a lot of instances. In NL we have the Rosmalen/ZonMw debacle, but nobody is talking about how the university hospital of Groningen is making a mess of things by having her run things. I think certain people are beyond shame and others operate shady or from the shadows. You mail Cochrane and you get a nothing-burger back signed by Cochrane the organization without someone putting their name to it. You complain about Rosmalen and she's just gonna shrug, if it hasn't bothered her for the past 10/20 years, why would it now.

The universities etc. hosting and in some places funding these people might be otherwise inclined.