The P2P Draft report is out

[Bob]

The multimodal model mentioned in the draft report has been applied to ME in a few places in Scandinavia, among others Stockholm, Sweden. In Stockholm the Health Board decided to see if the health care needs of ME patients could be met by a multimodal therapy model. They initiated a project with a multi-team, involving nurses, physiotherapists, psychologists, social workers. Now, around 5 years later, the project has been evaluated and it has been concluded that this model did not at all meet the needs of the ME patients. The treatment model was very similar to the CBT-exercise model. Many patients actually experienced deteriorated health.

In Stockholm, there is now agreement between the multi-team project management and other caregivers, patients and politicians that the multimodal model did not serve the ME patients well. Instead, what is needed is biomedical specialist care. While psychologists, social workers, physiotherapists can be useful for ME patients (if they are knowledgeable about the biomedical disease mechanisms in ME, PEM, etc), the money is much better spent on a multi-disciplinary team of physicians, including a neurologist, an immunologist/infectious disease specialist, a rheumatologist, etc. The politicians in Stockholm have announced that a new ME centre will be established, focusing on biomedical specialist care with only one nurse/administrator and all the other resources spent on ME knowledgeable physicians.

That's very interesting. Are you aware of any literature that can be cited in relation to that, Anne? e.g. any official health-service documents or published research papers? (Preferably anything written in English.)

 

[jimells]

Are researchers afraid of publicly calling the PACE trial flawed, misleading or dare I say a fraud?

Maybe they are too busy doing real research. *I* can't do any research, but maybe I can do some agitatin' instead...

 

[Jonathan Edwards]

That's very interesting. Are you aware of any literature that can be cited in relation to that, Anne? e.g. any official health-service documents or published research papers? (Preferably anything written in English.)

I agree that this is very interesting. I suspect only in Scandinavia and perhaps Holland are human beings in a position of responsibility sensible enough to call a blunt spade a blunt spade and get a new one. It would certainly be worth pointing the P2P people in the direction of any documentation of this change.

 

[jimells]

...the psychiatrists wishing to label many conditions as Bodily Distress Syndrome.

Would that be also known as "We Don't Wish to Treat You Syndrome"?

 

[Anne]

Would that be also known as "We Don't Wish to Treat You Syndrome"?

Exactly....

 

[Anne]

Quote from @Bob: That's very interesting. Are you aware of any literature that can be cited in relation to that, Anne? e.g. any official health-service documents or published research papers? (Preferably anything written in English.)

I agree that this is very interesting. I suspect only in Scandinavia and perhaps Holland are human beings in a position of responsibility sensible enough to call a blunt spade a blunt spade and get a new one. It would certainly be worth pointing the P2P people in the direction of any documentation of this change.

No, sadly there are no real official documents stating this in a good way. We do have a written promise from the politicians in charge that they will now create an ME clinic focused on biomedical care and research: http://stockholm.kristdemokraterna.se/det-har-lovar-vi-for-me-patienter/

However, it's a long way to go yet... I think you are right, Prof Edwards, there is some hope for politicians here, but there are also strong forces working against adequate ME care and ME research in Stockholm, in Sweden and in all of Scandinavia (mostly people in the medical field who won't let go of the blunt spade....) We don't know the outcome of this yet.

So all we have is the clinical experience and the turn-around of the Health Care Board. But for what it's worth, I will write a comment to the P2P draft report informing them of this.

 

[jimells]

I haven't submitted an official public comment yet, but when I do it will not include specific recommendations to make the report smell a little better. I want the public record to include at least a few of the many illegal and unethical actions taken against patients and our advocates. Coverups do tend to get exposed eventually, and I'd like to be a part of that in some small way.

I'd like to give the report writers every opportunity to inform themselves about the politics surrounding their report. If they choose to remain ignorant, or choose to continue their association with the P2P, well, that will be between them and their conscience.

 

[Valentijn]

Yes, I looked at that study in detail. I found it hard to interpret. It looked like an initial trawl of lots of genes that would need replicating on a few targets genes to get statistical meaning. I have not seen anything subsequently. I was also a bit flummoxed when I asked Julia Newton what she thought of the Lights' work and she said she had never heard of anyone called Light.

I think they've run a couple studies now where a few of the genes involved showed big changes in both studies. But I think others only showed up in one study but not the other. So it does look like they're taking a pretty rigorous approach to their own research, even if other groups aren't attempting to replicate the PEM gene expression results yet.

I think Newton does very good research, but isn't aware of the nuances and politics regarding ME/CFS. As such, she seems to get sucked in by BPS groups a bit and might also be one of the people who isn't capable of disagreeing with authority. And the current authority in the UK heavily emphasizes deconditioning theories (which could still fit in with her focus on OI problems), and not much rigorous science investigating that assumption.

Basically she seems to be primarily a non-ME researcher who has branched out into ME research. But her primary interest is OI and fatigue, not ME specifically.

 

[Bob]

I think Newton does very good research, but isn't aware of the nuances and politics regarding ME/CFS.

Perhaps still finding her feet within the complex world of ME? I get the feeling that Julia Newton is more focused on her research than the politics. Which is how it should be.

 

[Valentijn]

3. If all the money spent on supplements went to research we would probably have about $400M p.a. and that would do it!

And we'd all be sicker, in more pain, addicted to heavy duty painkillers, and possibly dead from suicide. I consider the supplements I'm on now to be essential, since I value being able to walk to the bathroom alone and sit upright during the day, and without too much pain.

We need real funding from governments, not nickles and dimes from patients who already lack the money to live comfortably, or even safely.

 

[Valentijn]

I agree that this is very interesting. I suspect only in Scandinavia and perhaps Holland are human beings in a position of responsibility sensible enough to call a blunt spade a blunt spade and get a new one. It would certainly be worth pointing the P2P people in the direction of any documentation of this change.

You're wrong about Holland (The Netherlands). They have a BPS group just as bad as the British one, and the two groups actually work together fairly often. The Dutch Minister of Health is also now blatantly favoring corporate interests over health interests. There is no treatment for ME patients, unless wanting to be told that we need to go exercise and stop thinking that we're ill.

Doctors here are all aware of ME due to the series of outbreaks around 2010 following the Q-fever outbreaks, but either believe that exercise is the cure, or that the CBT being offered is for coping. The one huge advantage in the Netherlands is that the general public knows what it is and takes it seriously. So even though many people with a medical or psych background will deny benefits and such as much as possible, the agencies who deal with the more social side of things know exactly what ME is and they know how serious it is. So it's fairly easy for the official independent doctor's recommendations to go in the rubbish bin.

We have doctors here who are very happy to believe in grand psychosomatic theories, especially in regards to hysterical women. And a government which is very practical about saving on short-term costs with no concern for long-term costs. So one group churns out the BS, and the other group has a nice excuse to avoid funding treatment, and instead uses a fraction of those euros to fund more psychobabble. They get along very well, even if the politicians likely know that ME is a serious biological illness.

 

[Ember]

I think there are huge problems in taking a value from a form as a quantity for fatigue or depressed. I don't see how it can be justified mathematically and certainly not in terms of quoting the mean and SD from these forms. We should be pointing out the problems in the measures already used not saying can't we measure PEM in the same way.

If I remember correctly from my student days, statistical analyses show that the best item on standardized depression scales is “I feel depressed.”

Having said that I think it would be useful to characterize PEM but then to do something like the Lights are doing and look for changes in the body. But how could PEM be characterized? Is it the time delay, the severity of the symptom increase vs the activity, is there a activity threshold below which it isn't noticed or is it a more gradual (non-linear) function.

ME experts use the term PENE: “The cardinal feature [PENE] is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.”

Characteristics are:

1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.

2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.

3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.

4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.

5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

Experts from other fields may object:

To be honest I am not sure they know quite what they do mean. This is not how I would expect a scientific concept to be described. It is a muddle. If you put your money on a muddle you may be disappointed I think.

The two-day exercise test has been providing validation for PENE. We need to demand larger studies, consistent with the future research needs identified in the Evidence Report: “Further studies are needed to determine the utility of 2-day cardiopulmonary exercise testing to identify or monitor symptoms of post-exertional malaise (sic).”

 

[Nielk]

And we'd all be sicker, in more pain, addicted to heavy duty painkillers, and possibly dead from suicide. I consider the supplements I'm on now to be essential, since I value being able to walk to the bathroom alone and sit upright during the day, and without too much pain.

We need real funding from governments, not nickles and dimes from patients who already lack the money to live comfortably, or even safely.

Let's not forget that the government money is really funded by its constituents. (Us)

 

[jimells]

We have doctors here who are very happy to believe in grand psychosomatic theories, especially in regards to hysterical women.

The fact that "modern medicine" *still* uses the insulting term "hysterectomy" says it all...

 

[Sing]

Perhaps still finding her feet within the complex world of ME? I get the feeling that Julia Newton is more focused on her research than the politics. Which is how it should be.

I read recently that Julia Newton has become friends with the Sonya Marshall-Gradisnik at Griffiths University in Australia and I remember that the latter won a large grant for a research project which could benefit us, so Dr. Newton is probably learning--

 

[alex3619]

And in fact PACE is probably rather useful in showing that even using Oxford criteria CBT and GET achieve nothing of human significance.

It does feel like the world is oblivious to the PACE demonstrating the opposite of what it claims to demonstrate. Are researchers afraid of publicly calling the PACE trial flawed, misleading or dare I say a fraud?

Researchers stick to doing what they need to do and in general do not criticise. Bad science fades out rather than being revealed as bad. That is a pity, since it can take a long time, but it is the tradition.

I think there are sufficient grounds to begin looking at making a claim that the PACE trial research should be retracted. Its that bad.

There are multiple issues with scientists and doctors not speaking out. Its a complex social phenomenon, with political overtones, not just a scientific one.

Many are concerned about future funding. Annoy enough potential funding reviewers, and publication reviewers, and your career might be in trouble.

CFS itself is a topic frowned upon at most academic institutions.

Many people do not want to comment outside their area of expertise. Unless they are an exercise physiologist or psychopsychiatrist most wont feel they have the expertise to comment, even though the flaws in this case are mathematical, statistical and rational errors.

This branch of psychopsychiatry is a tiny little area, very closed. There are not many in it.

Who is going to throw stones while living in a glass house? Many areas of medicine are still under-supported by sound evidence and research. Further, there is a pressing need for psychiatric services which are under-provided, while at the same time much if not most of psychiatry is dubious or even fanciful. If they complain about PACE research, and then other research, its only a matter of time before their favoured research is challenged. Further, if psychiatry is discredited too much then services to patients will become even worse.

Sociologically its as Jonathon says, people get on with doing their own thing and largely ignore the competition, and gradually (slowly) the better ideas win out. I don't think it has to be this way, call me a an idealist when it comes to science, but the reality is it is this way for now.

The medical profession has another layer of issues over scientists. They do not have time to keep up to date, when I usually hear about doctors being up to date it usually translates to being as up to date as other doctors - which on average is woefully out of date. I would be surprised if most even have heard of PACE, and most that have done so have only read brief reviews or the abstract. The current system has doctors the most up to date when leaving medical school, or about five years behind cutting research. After that it keeps getting worse. The systems that are supporting doctors are failing them and the patient community.

Doctors usually become aware of these issues only when they take a personal or academic interest. The rest don't have the time or resources. There is also a social/ethical thing with doctors, in that they are encouraged to maintain the integrity of the profession. Sadly this seems to be inconsistently applied - when the patients are alarmed at the poor state of medical knowledge then the integrity of the medical profession is already damaged.

So we cannot expect the P2P to properly address this issue. It is however a start.

 

[Freddy]

And in fact PACE is probably rather useful in showing that even using Oxford criteria CBT and GET achieve nothing of human significance. I realise that for PWME it seems that this message has not been heard but I talk to lots of researchers who take precisely this message from PACE. The useful work goes on in the shadows very often - by people who do not publish until they have made a quantum step forward.

@Jonathan Edwards
This is exactly what I am/was afraid of. You hit the bull's eye psychlogically, at least for me!
(perhaps you would perform quite well as psychologist)

For me, and I think for many others, PACE goes like: oh, there is a black cat. I can clearly see it, but everybody keeps on saying "what a beautiful white cat". And not a single person objects. It is really absurd! The result is an urge, to shout out the obvious vigurously and this leaves us in an angry and unpeaceful state.

So you really say, that a lot of researchers came to the same conclusion? This safed my Xmas.

 

[Aurator]

The fact that "modern medicine" *still* uses the insulting term "hysterectomy" says it all...

Hysteria may rightly be considered insulting if it is applied solely to women, but hysterectomy is only an insulting term if you have been given a false understanding of the Greek etymology underlying it.

 

[Kati]

Jonathan Edwards said: ↑
And in fact PACE is probably rather useful in showing that even using Oxford criteria CBT and GET achieve nothing of human significance. I realise that for PWME it seems that this message has not been heard but I talk to lots of researchers who take precisely this message from PACE. The useful work goes on in the shadows very often - by people who do not publish until they have made a quantum step forward.

PACE is being very successful in delaying sound research, and make believe the decision makers that we are unworthy of research funding.

PACE has been very successful (sadly) in disseminating the research in every country and in the Cochrane database, which is used by physicians from around the world.

 

[Jonathan Edwards]

@Jonathan Edwards
For me, and I think for many others, PACE goes like: oh, there is a black cat. I can clearly see it, but everybody keeps on saying "what a beautiful white cat". And not a single person objects. It is really absurd! The result is an urge, to shout out the obvious vigurously and this leaves us in an angry and unpeaceful state.

So you really say, that a lot of researchers came to the same conclusion? This safed my Xmas.

PACE is being very successful in delaying sound research, and make believe the decision makers that we are unworthy of research funding.

PACE has been very successful (sadly) in disseminating the research in every country and in the Cochrane database, which is used by physicians from around the world.

I think the great majority of researchers in the field would take PACE to be inconclusive or irrelevant at best - certainly if we consider the researchers whose names come up on PR and attend the meetings I have been to. There are one or two groups in the UK who study psychological issues, as people know, but every one else is trying to find biological mechanisms in muscle, nerve or immune systems.

I am not sure that PACE has delayed sound research, actually. The sound research has been slow coming I think because few scientists have seen ME as a problem they could get to grips with and make progress in. Ironically, it was the dissatisfaction with PACE that got the MRC initiative into biological studies going I think. Government funding bodies spend rather little of their money on targeting specific illnesses. Most of it goes to universities which are allowed to encourage individual scientists to develop their interests. I think that is generally a good policy because commissioned research tends to be dull research.

I certainly agree that PACE seems to have altered the healthcare delivery programme very widely. But there may be an irony here again. Having an approved treatment has allowed ME/CFS specialists to set up ME/CFS clinics and employ staff. If those staff see themselves purely as CBT or GET deliverers, which is the main worry, then that may not be good, but my impression is that at least some of these staff have enough common sense to be able to provide patients at least with some ungoing support in terms of recognising the severity of their illness and advising on practicalities based on experience with treating others. So it may not be all bad. At least some GPs will spend their budget on referring to these clinics. If there was no approved treatment then I suspect there might not even be specialists in ME/CFS in the NHS. This raises an important issue relating to getting it accepted that PACE may tell us very little. Provision of clinics may get even less. I think it is worth taking that risk, but one can understand why some ME/CFS specialists might keep quiet.