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

I agree funding for research is as much an issue and we tend in UK to focus on bps issues more. If the MRC has committed £1m / year since 2002 when it was supposed to get serious, or tried to do the bleeding obvious like get the PET or CPET research replicated we wouldn’t be in the situation with NICE and CFS still perceived as grey fatigue area and the only evidence to discuss CBT .

But the whole system is rotten and feeding off each other, the name criteria and history, no research , psychologists leading fatigue centres , hype over BPs intervention, there’s no medical training etc

 

Rereading the above, I wondered if I was in fact saying there were three main points, the third being that ME is a 'real' biomedical disorder. 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. Simply presenting the evidence, hopefully will make it clear that there is an internationally accepted understanding of the biological systems involved in the condition, if not of the causal pathways, making the BPS crew's failure to attend to the evidence clear.

We need to shift the debate away from the BPS's home ground of our presumed psychological failings that gives them justification to ignore whatever patients say to the context of the thousands of smaller studies demonstrating biomedical abnormalities, the context that sufficient research funding will pull this wealth of knowledge together and produce very real results. We need MPs to believe that by just giving a few million for the right research will improve the quality of live of a significantly large group of people, that their help is all that is needed to usher in a new golden age of ME research.

There is the further issue that the failures of our current research system and the failure of the journal system are what have made the current mess possible. The major failure to use good research methods in psychological/behavioural interventions, the frequency of research misconduct, the failures of the ethical aproval systems, the failure of journals' peer review systems to pick up these issues and the failure for journals to address their failings in this regard even when repeatedly pointed out to them also will only be solved by political intervention.

However though this academic incompetence and misconduct typify the work of the BPS crew, it is becoming increasingly appearant that they are much more widespread than just behavioural research into ME/CFS, so I wonder if this requires a separate public campaign.

[added - though it is important to give MPs something they can get fired up about, it is then vital to give them simple clear postitive actions they can support to make things 'better'.]

 

Yes. It has to be done, but done right. And the right way appears to be showing that the BPS approach doesn't work, is actually harmful, and based on deceitful science. Biomedical research has transformed our understanding of vague syndromes and made them understood and treatable and that this is the path we patients want to go down now. We can also cite some biomedical research (PEM stuff for example) but remember that @Jonathan Edwards thinks much of it is unreliable so it shouldn't form the main argument.

 

For those of us with Tory MPs might the political context of the PACE trial be a helpful angle?

The PACE trial uniquely was funded in part by the DWP (Department of Work & Pensions) but also in part by the Department of Health, both government departments, as well as a more usual research funding source, the more politically independent MRC (Medical Research Council). This political involvement in medical research took place under the Labour governments of Tony Blair and Gordon Brown.

I personally regard the whole inception of the marketable discrete pyschological/behavioural care packages (GET/CBT) to reflect the Blairite philosophical/political context, which is reinforced by Gordon Brown's subsequent intervention in favour of the research that was then used by the researchers to bias participants in their bizarre mid study newsletter.

Is this something we could use to play on the prejudices of Tory MPs to dispose them against PACE?

 

Going from the last debate there wasn’t anywhere like the depth, detail or complexities / nuances we as patients are discussing here, it was much more basic as to
“look it’s real and disabling anD under resourced, these people are very sick and ignored, there seems to be this behavioral research heavily influencing U.K. that looks suspect and still an nhs approach based on psychological rather than medical management, there hasn’t been enough research funds input so theres no medical treatment, my constituent isnt getting medical support as there arent services in her area and the GP is hostile. Etc “

 

Oops, you're right - I don't know where I got 'three hours' from. I've removed it from the thread title.

 

It goes back further to Peter Lilley (Tory) and the DWP working in cahoots with UNUM back in the early 90's.

Edited to add the following:

When labour were in power there was a TV programme showing UNUM involvement with DWP and I wrote to my MP (Tory) about it, he was interested and invited me to go to his constituency office and tell him more about it which I duly did and he asked me to send him more info, which I did.

But of course the more info involved him finding out that the whole liaison between UNUM and DWP went back to the days of Peter Lilley and the Tory party hence he realised this wasn't a party political issue he could use against Labour ( which I'd strongly felt was the reason for his interest ) and suddenly his interested vanished.

 

I'm thinking of writing to my MP when we have a date. When I had my PIP assessment and complained to Atos I copied the complaint to her. She very kindly took it up with Atos, and sent me their reply to her. However they didn't touch on the comment my assessor made that my wheelchair wasn't prescribed by a medical professional to her. I'd intended to write back to her but Life Kept Happening with gathering evidence for tribunal and so on. This debate would be a good excuse to write to her about it.

I think the way PWME are treated by the UK Benefits System is dreadful. I've heard from 2 other PWME being refused higher rate of "moving around" for the same reason, so am guessing it may be quite common. So even though it's only an anecdote I think it might be worth asking my MP to bring it up at the debate. She is very hard working, so may not be able to attend, on several parliamentary committees.

Apologies if this isn't very clear, struggling to put words in order this morning!

 

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

 

Not in my opinion. For most Tory MPs, PACE falls right in line with their beliefs about personal responsibility - first that the majority of ill people are responsible for being ill, and secondly that the responsibility for getting better is on the patient, and if they don't get better then it's obviously the patients fault.

I believe that they would be more inclined to listen to arguments based on economic issues, but we'd need decent evidence to back it up.

 

It was in the thread title, which is where I got it from, but I see the "3-hour debate" that was in the title has now changed to "debate". @Sasha?

 

Some good economic arguments:

Taxpayer money is being wasted on treatments that don't work and BPS junk science.
The UK could play an important role in developing biomedical tests and real treatments. It is well positioned for that, but investment in research will be needed.
Since no tissue damage has been found in patients, there is hope that with the right treatment they could lead (near) normal lives.
The illness is a major cause of school absences and prevents children from reaching their full potential. If we understood the illness better, we might be able to prevent damage, improve chances of recovery or at least limit the damage done.

 

I think economic figures speak more than suffering too. I saw MEA saying they’d invested £1m in research , I assume overall over twenty odd years, MERUK say similar, £1.5m. MS Society is investing £2m in eleven new research projects this year alone. We are not remotely able to drive forward research with what we fundraise without state help and the state (I know they’ve been asked), arent helping. Ironically there is that booklet on CFS research funds comparitive to other illness the CMRC commissioned. If a couple of illnesses, like MS and another, could be contrasted in terms of guesstimate on research funds plus progress in understanding and treatment with our own it should make that point.

Having a basic average figure needed to be invested in research to make good progress contrasted with ours surely would be powerful.

Then there’s the research on cost to the economy. The amount being spent is tiny compared to cost on economy and I think that’s just bad business sense, it’s like spending £100 to insulate a house costing you £1000s due to poor insulation and heating bills.

It’s important to emphasise that it’s often people in working age in prime or parents of children who then not only rely on benefits but loose “productivity”.

I think the problem is that the BPS narrative has been powerful enough previously to claim to be the cheap solution to this economic problem. If it could be quoted both wessely 2007 and the BACME last year admitting a third they can’t do much with and another third they just improve, anD that’s likely of their broad 600 000 umbrella, then even if you accept behavioral treatment there’s still an urgent need for more than this and this need hasn’t been met.

I’d like to see a call for intervention similar to the recent intervention on brain tumours as the ultimate goal of MPs in this debate, plus maybe an inquiry into NHS, NICE MRC etc response, plus some commitment to see a marked improvement across the board in five years , with steps, committee’s etc to ensure this. .

 

Legitimate concerns about PACE need to be raised but they will likely fall outside of the scope of a policy debate. It is also a huge can of worms that will eventually massively embarrass UK medicine, given the failure of supposedly independent organisations like the Lancet and Cochrane to perform their basic duties in knowingly promoting poor quality subjective research at the same level as large, longitudinal double-blinded trials with objective outcomes and measurements.

The NICE guidelines however are more relevant, as they are official government policy. And although it can be similarly argued that it is a matter of science, it is also clear that the guidelines were put in place without supporting evidence. This is a point that is very relevant in any forum: subjective evidence is simply not valid in medical science. The main point of contention is denial from ideologues that ME is a medical concern at all, which is what allows them to pass subjective evidence of exceedingly low quality as good science.

There are 3 salient points about the NICE guidelines:

1. They were and still are objected to by the overwhelming majority of patients, advocates and by researchers that actually work with the patients and advocates. This is not something that happens randomly. It is not normal. It has also been consistent over decades, unlike the various explanations and acronyms and shifting goalposts from the psychosocial ideologues, who change their arguments depending on the audience and context.
2. The review is under way and being subjected to exactly the same concerns and opposition as the 2007 and 2017 reviews were. Again, this is not normal. Medicine is never supposed to have strong objections by the overwhelming majority of patients. This is not something that should happen, and yet it has been consistent for decades at this point, including the initial trials like FINE and the rest of the psychosocial house of cards from when White, Wessely and Sharpe came barging in on the scene trashing decades of decades of research and saying they had intuited the answer.
3. The guidelines have been in place for 11 years and still face overwhelming rejection by patients, who consider them unfit for purpose and harmful. Where is the data showing that they work? They were continued in 2017 by NICE. On what grounds? Pointing to decade-old research doesn't cut it at this point. Where are the longitudinal studies? Where is the objective data showing ME patients actually improve? Where is the follow-up? How can policies be maintained without any evidence whatsoever? This is normally not allowed for government work, which is supposed to be based on fact, not opinion.

PACE is the glue that holds everything together, but it can be reasonably argued to be an academic subject. It is not, considering it is horribly flawed science and the public claims about what it showed are as detached from its conclusions as the conclusions are detached from the underlying data. But this is likely what ME deniers will argue.

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.

 

Exactly, @Peter Trewhitt ! A simple, distilled summary.

Millions Missing Canada has a simple summary for action that follows its explanation of the problem: "Stop the Harm, Fund the Research, Start the Treatment".

Because this message follows a more detailed explanation, it is understood by the reader that the harm is psychological and physical from inappropriate treatments, and neglect, fund biomedical research, and the MMC is working on securing the ME drug Ampligen for Canadians with ME, which is also discussed within the body of the explanation.

 

It's not just that we ended up in a terrible place, it's about how we got here.

After CBT and GET as first-line interventions have been smashed to rubble, we have to take a good look at how society views the chronically ill and begin smashing at that larger edifice.

Unless we make it as shocking to campaign against disabled people as it is to fight against any other minority group, this will come back again with a new coat of paint. MUS is already waiting in the wings in some places, actively planting a flag in old ground in others.

 

Yes,@strategist! Economic arguments. Not only are these costly wasteful "treatments", but they don't accomplish what is promised: pwME, who no longer have ME; getting back to work and school. Responsible governments (and maybe that's an oxymoron) would carefully examine the evidence, and see that continuing along the PACE line, and all its spin off clinics etc., is throwing good money after bad. Of course, "eminence-based medicine", has hoodwinked governments into believing the "proof" put forward by BPSers that GET and CBT work.

Amazing, as to why public servants everywhere don't follow up with work and disability departments to see if these "treatments" are indeed working. Connect the dots, dudes!

 

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. Those theories keep morphing, don't they?!

Suggestion for a campaign to help dispel stigma about disabilities: teaming up with other disability groups.

I know, I know...good luck, getting the public et al to see those with disabilities as equals.

Re "there is no stigma associated with a psychiatric diagnosis". Utter nonsense of course, as we know. Look how we've been treated.

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.

If I struggle with my attitude about those who are depressed, but lead more or less way more active and enhanced lives than me, how do we combat those with more intransigent negative beliefs about psychiatric diagnoses?

I also think there is a common streak of cruelty running through society. It's like the farmyard, where one poor chicken is different looking, and the others pick on her. Some people like to do that - it's a human need for some - to pick on others. I think this is what Jennie Spotila means by the term "othering".

We see it all the time, no matter what station in life one holds. The "upper echelons" do it; they just disguise it better in "academic bafflegab", and eminence, to make it sound reasonable, and "sciency".