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

[DokaGirl]

Lots of things to say about that on this thread: https://www.s4me.info/threads/who-s...-work-or-drop-in-benefits-after-get-cbt.6822/

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!

 

[JaimeS]

Talk about covering all the angles!

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

 

[DokaGirl]

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.

 

[JaimeS]

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.

 

[DokaGirl]

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!

 

[NelliePledge]

I feel like some kind of process map or personas showing what happens to different people in the U.K. in terms of applications for employment/private ill heath pensions or state ill health/disability benefits might help clarify things. I still think the influence of having done CBT or GET is more pertinent for access to relatively generous private pension payments which makes receipt of ESA unnecessary/impossible and of PIP less financially critical.

I don’t think people don’t think they’re entitled to PIP they know the process is a nightmare and that is off putting.
Sorry realise this is off thread here happy for it to be moved

 

[DokaGirl]

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.

 

[JaimeS]

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

That's for sure!

 

[obeat]

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

 

[Cinders66]

The thing is every disability/disease/illness group are citing unfairness in the benefits system, lack of money for research, lack of treatment etc etc. (The MS society are holding an event in Westminster on Mon 26th see https://www.s4me.info/threads/nice-to-update-guidelines-for-ms-oct-2018.6457/#post-124002.)

Even if M.E. were properly recognised as a biological illness all these injustices would still be happening.

To make any impact on the status quo with regards to how M.E. patients are regarded and treated people need to know and understand what has happened in the past and the implications, not just here, but worldwide.

A very brief history (not going into all the clusters etc) but showing how Simon Wessely and others changed the name to CFS 1996, changing the diagnostic criteria and placing the emphasis on fatigue, pushed the deconditioning/unhelpful beliefs theory, and with it the idea that the illness could be reversed/cured with psychotherapy and exercise. This change of focus, ignored all previous biological findings done on M.E. , lead to the inclusion of patients with other fatiguing conditions being included in trials and stifled biomedical research into the real causes of the illness M.E.

This lead to the 2007 NICE guidelines being drawn up, largely by psychiatrists, outlining in detail how patients should be discouraged from seeking biological explanations for their illness, and instead undergo a very specific form of cognitive behavioural treatment (CBT) which (unlike for many other illnesses for which it is used) is used to direct the patient to ignore symptoms and push through with activity. This was combined with graded exercise therapy, which similarly, directs the patient to increase their exercise regime (by up to 20%) a week, regardless of how it makes them feel, or suffering relapses. These guidelines were based on a small number of clinical trials on CBT and GET, but a much larger trial was already underway.....

The PACE trial - really basic 'idiots guide' showing clearly the key points (see Brian Hughes presentation) with a couple of graphs. Including sampling, lack of blinding, outcome switching.
PACE presented as a 'great trial' and 'a thing of beauty' by its supporters, and regarded as gold standard.........puts into question the other trials done, and in fact on closer inspection they too suffer from the same flaws.

Why is M.E. any different from other illnesses?
Classified as a neurological disorder since 1969. That is the same group as Multiple Sclerosis and Parkinsons for example. Yet NICE will not acknowledge this (see 2007 NICE guidelines). The few clinics that are supposed to be treatment centres for M.E. are largely under the mental health services and the majority are fatigue clinics using the same treatments as the PACE trial.

Unlike MS and Parkinsons, public perception of ME is of a 'non-illness', a view strengthened by the constant output of mis-information regarding the nature of the disease by the SMC resulting in headlines in the press such as (egs of headlines...positive thoughts and exercise etc).
Despite the lack of funding, there have been many biomedical breakthroughs (mostly coming from America) adding to the now overwhelming evidence of biological cause and perpetuation of ME. (maybe list a few key ones).

Yet these findings are rarely reported and, apart from a handful of interested medical professionals, not disseminated to the general medical establishment. Meanwhile those who have created careers for themselves on the back of unsubstantiated theories are regarded as 'experts' and thus in a position to further dictate how ME sufferers are treated and perceived.
End with quote from Montoya about the medical profession owing ME suffers an apology.

This needs to happen now. Beginning with a removal of the current NICE guidelines (not waiting until 2020) with regards to the recommended treatments that were purported not just to help with the symptoms of the disease, but to actually cure it, and giving ME equal status as other neurological illnesses both in terms of research funding and, eventually treatment.


(Apologies for any inaccuracies)
eta: report 1996 changing name ME to CFS,
"
The sixteen-strong committee was top-
heavy with psychiatric experts, so the emphasis on
psychological causes and management (introduction
of graded exercise and cognitive behaviour therapy)
is no surprise."
https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(05)64917-3.pdf

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

 

[JemPD]

However I suspect by explicitly raising the psychiatric versus biomedical debate we play into the hands of the BPS crew who can then muddy the water by saying the mind and the body interact, that mind and body is not a meaningful distinction, that the symptoms are real, but the solution is behavioural or that there is no stigma to a psychiatric diagnosis.

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.

Because finally, I think there are legitimate grounds to argue that we are at a crux that is not a matter of conflicting opinions, but one of denial. The psychosocial ideologues deny that this disease exists as it is experienced by patients and as it has been described by biomedical researchers going back decades.

The original Ramsey definitions were much more solidly grounded in reality and evidence than everything the psychosocial ideologues have published over 3 decades. This is not a difference of opinion, it is a conflict over basic facts. Psychosocial ideologues are in the same camp relative to the topic as climate change deniers and HIV deniers.

Denial is not only over whether something exists, but over how it exists. HIV deniers do not deny AIDS exists, they simply deny it exists as characterized by an HIV infection and believe an alternative explanation of their choice. ME deniers do not deny it exists, they simply deny it exists in the form that patients experience and testify to, something that has held consistently over decades. It also denies and dismisses the body of biomedical evidence. That we don't have the full answer is not a reasonable ground to arbitrarily ignore decades of research.

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

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.

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

 

[fivetowns]

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

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)

 

[Barry]

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.

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.

 

[Sly Saint]

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(?)]

 

[MEMarge]

You are producing excellent summaries @Sly Saint

 

[NelliePledge]

You are producing excellent summaries @Sly Saint

Yes agreed sorry to be cheeky and I don’t do this myself sometimes but any chance you could put some spacing in between that list to make the points easier to read

 

[Inara]

I have a hard time not seeing their depression as something of their own making.

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.

 

[Barry]

And, I know in my heart of hearts, when I look at some I know who don't have ME, who can work, go to school, have a family, and do buckets of things I can't do, and yet they're depressed, and complaining about their lot in life, knowledge of chemical imbalances, and terrible family situations aside, I have a hard time not seeing their depression as something of their own making. I think others, if they're honest with themselves may feel this way too.

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.

 

[NelliePledge]

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's 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.

Example I was diagnosed with depression due to coping with parent having very severe dementia for 15 years prolonged grief. When they died I no longer had the low mood.

 

[DokaGirl]

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.