Carol Monaghan has applied for a debate in UK House of Commons main chamber

Thank you @JaimeS. If I understand correctly, confounding variables mess up the return to work or school data. However, the results from

Belgiam show a decrease in employment status and and increase in sickness benefits post trial. Still amazing that didn't ring any bells for tptb.
Or did it?




It looks like if the BPSers can't succeed with CBT and GET to prevent pwME from applying for sickness benefits, then they brain wash them into believing there is no


point in applying: perceived access. In other words, they create learned helplessness for these people. From https://www.verywellmind.com/what-is-learned-helplessness-2795326 "What is


Learned Helplessness? When people feel that they have no control over their situation, they may begin to behave in a helpless manner. This inaction can lead
people to overlook opportunities for relief




or change." This website goes on to say learned helplessness is associated with depression, anxiet
y, phobias, shyness and loneliness.





Contradictory, I would think re the main




premise of CBT and GET - pwME are masters of their own fate.

I wonder when this part of the "therapy" kicks in. When it's noted the patient is not cooperating? Then the therapist switches
from you are the master of your own fate to, don't bother seeking sickness benefits because they aren't available to you, "you undeserving sick pwME."

Talk about covering all the angles!

 

Going to reply to this in the other thread so as not to derail this one.

 

Thanks, @JaimeS . Will read your comments in the other thread. However, this does apply to the financial effects of GET/CBT therapy. If I have understood correctly, maybe this bit shouldn't be highlighted, as governments might want pwME to think they are not eligible for sickness benefits.

 

IMO, that's why PACE is still held up as a success by the original authors.

The goal wasn't to cure people, it was to save the government money. As we said on the other thread, people were more likely to turn to private insurance instead of asking for government help after they underwent CBT or GET. These treatments posited that pwME can think their way out of illness. That if they didn't, it was their choice: an 'attachment to the sick role'.

So: the therapies were successful at convincing participants to not even try and ask for help.

Sadly, it's not a bug, it's a feature.

 

I agree, @JaimeS. However, I think
the goal is to save both government AND private disability insurance industry money. So pwME have nowhere to turn. UNUM et al were pretty freaked out about a tsunami of disability claims back in the 1980s.

Given the close ties between government and heads of corporations, both governments and industry were likely working together on this.

BPSers stated early on that GET and CBT did little or nothing to help pwME. This makes it all the more shocking that PACE was funded to the tune of millions. But how difficult would it be to prove that the real goal was to convince pwME they are not worthy of even applying for sick benefits?

That could mean that the powers that be knew all along ME is a serious biomedical disease, and that they just wanted pwME scraped off the benefit roles, or not applying in the first place. Nice bunch! Pardon the pun!

 

The Canadian government "supported" Cochrane reviews on GET, and CBT. I'm guessing this means supplying money to Cochrane for these reviews.

I am not aware that the Canadian government has ever required CBT and GET before qualifying for disability payments. Nor, am I aware that the private insurance industry in Canada requires CBT and GET before qualifying.

But, it's only my very limited knowledge on this topic, and I might have forgotten that this is indeed the case.

From my personal experience, CBT was viewed by medical professionals as good
for pwME to engage in. GET was never pushed. But non-graded exercise was endorsed.

I've had ME for well over 30 years; theories changed along the way.

 

That's for sure!

 

NICE are supposed to assess cost effectiveness of treatment, so benefits data etc after PACE is important.

 

The MS complaint is specific to NICE refusing to fund one drug due to cost effective issues which they rightly lobby on. Its different to the catestrophic systemic failure of all relevant establishment bodies to treat an illness appropriately. i don’t think other illnesses with similar numbers and average and potential debility have such low total research funding over 20-30 years - the UK charities have probably a combined £3m total, the MRC probably at best around £3m, all added up to say £6-7m, this is probably dwarfed by overall biomedical research spending on MS, Parkinson’s , arthritis over that time.

I think something very positive was Nicky Morgan at the last meeting recognising that the medical establishment was powerful, essentially a law unto itself as an elite, but it could get things wrong with no way to really check this unless MPs intervened. The whole UK approach has been based on the wrong approach / premises of the 90s with huge resistance or simple indifference to the need to radically change

 

This, this & this again.
Most MPs will fall into this trap if we let them & i dont think we should underestimate the importance of making this trap abundantly clear/making sure they are knowledgeable enough to avoid it. This fudging is i believe one of the prime ways in which the BPSers will make the debate toothless & meaningless in the grand scheme of things, so it is of paramount importance that if we do produce a briefing, this is included clearly, at the outset. I'd almost say it was more important than anything else, because without avoiding this trap, anything else that gets said will essentially be a waste of time.

my bolding.

Oh my goodness such an important point. PACE etc is how they are doing this, and it's important that it's made clear that this denial comes first.
PACE & the other scientifically bankrupt studies are accepted (when they wouldn't be elsewhere) because they are the way they are enabling their denial, rather than the other way around which is assumed by most - ie the psychs had a theory, tested it with PACE et al & based on thos results they now deny it. PACE etc was set up as a means to allow that denial to be accepted & spread.



While the debate is good news, my worry in all this is that very well meaning & sincere MPs will fall into the traps of
'it's real',
'it's not mental it's physical' (- a bit like the MEA t-shirt),
& 'it's patients vs scientists/doctors' (rather than BPS ideologues & the ill informed vs actual scientists/Drs who've read the research without the ideological bias).

Im worried because if they do fall in to that, then it will be a heartbreaking waste of an opportunity - we know how all those points enable the routine obfuscation & misdirection that allows the dismissal of our actual arguments. And once a majority of MPs are fooled by the BPS BS dismissal, we really will be in trouble.

How can we prevent this? Especially when other groups will be lobbying them saying things just such as "my doctor says it isnt real but it is", "they keep saying it's all in our heads but it isnt"..... ugh i shudder to think what well meaning, uninformed patients/groups will be saying

Well done Nicky. It would be great to expand on that & perhaps use it as the overall context for pointing out the above points?

 

I think part of the problem is that detailed scientific discourse is difficult to fit into a parliamentary debate where speakers have limited time to make their point so MPs may choose to go for the easy emotional impact option of reading testimonies from constituents regardless of how ill informed they are. We need to provide short science soundbites (bleurgh I never thought I would ever have to use that word) that can be easily understood and used in the debate. I have a few ideas already:

• Embarrassment factor: Government funded research is being used in US universities as an example of how not to do a trial.
• Comparison to quack therapies - Outline the quackery involved in the Lightning Process and point out that in a trial with methodological flaws common to nearly all bps trials it was shown to have a positive effect on subjective outcomes comparable to those achieved by CBT and get. (I'm also looking to see if there are any more quack therapy trials we can compare to)
• Quotes from CBT/GET training manuals setting unrealistic goals for patients or that portray the condition as reversible. (Not strictly a scientific argument but shows the bps position for what it is)

Obviously there are a lot more to think of but I'm getting brainfogged. Also should we start a thread in advocacy planning about this? (I didn't want to start one without discussing it first because it's a super important project)

 

Worth keeping in mind that a debate in the HoC is very much a parliamentary debate, and not confined to government itself. There will be non-Conservative MPs with various motivations for wanting to expose what is happening for PwME, some definitely altruistic, others more than happy to cause strife for the current government - either way such MPs could be united in wanting to undermine any attempts by the government to whitewash things. And hopefully also some Conservative MPs with the integrity to speak out for what is right. This is part of the potency of having a debate in the HoC.

 

I was thinking about this some more and in addition to what I wrote before:

The consequences for people with ME;

ME being classified on the NHS under 'Medically Unexplained Symptoms'.

Patients with ME (contrary to what the proponents of 'Medically Unexplained Symptoms' would have us believe) often avoid seeking medical care for other co-morbid physical conditions.

Seriously ill pwME being inappropriately sectioned and forced to undergo detrimental treatment (eg Sofia Mirza).

Parents of children with severe ME being hounded by social services/medical professionals and accused of child abuse, for not complying with CBT/GET treatment recommendations. (Figures from Tymes trust).

Children with ME who do not respond to CBT/GET at best being blamed for not trying hard enough, at worst being diagnosed with Pervasive Refusal syndrome.

Not possible to accurately give figures for deaths from ME as requires non-standard autopsy (Merryn, and Sofia) and it is possible that the official cause of death is secondary to or as a result of having ME.


[medically unexplained deaths(?)]

 

You are producing excellent summaries @Sly Saint

 

I like your post, @DokaGirl, and agree in many parts, but this is something I cannot agree with. My personal experience is that most times feelings of sadness, melancholy and desperation are brought upon by external factors - and I won't be happier due to a mind change. Often, one simple reason is lack of money - yes, money, often it's money alone. No, one can't buy love with money, and love and loving relationships are important, too, and that's maybe an area where we have a certain influence. But there are so many areas we simply cannot change.

Examples:
I cannot change that there are wars on this earth and that nature is destroyed. The thought that people suffer due to some idiots and nature is destroyed for profit simply makes me sad. I can ignore it, but from time to time it gets back into my thoughts.
I can't change my financial situation - many healthy people can't either - and therefore, e.g., I can't move from an environment I don't feel safe in and happy with.
I also have to live the fact that I don't fit into "the system"; I have different values and goals, and there's just no match - no way. There's also no way to change it. Believe me I tried. It fails due to money. That will always be a source of sadness.

But I agree that there are people who are depressed due to reasons that really can be solved with their means.

 

Trouble is that's a very slippery slope. What exactly is it that is someone's fault? That they made the wrong choices at school and so end up in the wrong sort of jobs that they can never be happy in? Or the zillion and one other wrong choices we can make? Gets very tricky.

 

Yes,@Barry, and @JaimeS. It does get very tricky. And I do struggle when I have mixed feelings about certain individuals, or situations.

In general I try to take a no fault approach to these things. In other words, some may say I'm a raving Lefty.

I was voicing my frustration with situations more familiar to me, that have lasted decades, with little to no improvement. I am also negatively effected by these individuals' opinions, which has coloured my thinking, as in "It must be nice" to sit around all day, you "undeserving pwME". As in they dismiss my situation as inconsequential, but view their own as very important - a natural human tendency.

I am a proactive person, and have difficulty understanding people who don't want to help themselves, but look to others to fix it.

I just shake my head when I read BPSers say things like pwME are lazy.

This is probably an inadequate explanation for my expression of my doubts and struggles with some of the depressed people I know, but I can't seem to get any closer right now.