The Canadian Chronic Pain Task force report

A Canadian Chronic Pain Task for e report has now been published and shared with the public.
While i have not read the entire report as of yet, i can’t help but feel this report aims at psychologizing the experience of pain and chronic pain- there are strong correlations to what ME has gone through in the last decades.
Here is the link to the full report

A few exerpts:

(Bolding mine)

Here they are truly associating psycho-social to the experience of pain. And when they say ‘pain is complicated and multi-dimensional’, in my opinion, the chronic unexplained kind of pain is more complicated than say, cancer pain. There is a judgement being made by the health care worker as of whether the pain is legitimate or not.

Can you imagine being assessed by a doctor for chronic pain and being asked whether you are a lesbian or bisexual? It reminds me of this Canadian publication linking ME/cfs to childhood adversity and there are many doctors asking whether we have been abused as children.

Yes. Perpetuating factors. Bio, psycho and social factors interplay. Rings a bell?

And the list of interventions include...
Psychological Interventions


An intervention that aims to modify thoughts, emotions, or behaviours.

Examples:

• Individual and Group Psychotherapy
• Cognitive Behavioural Therapy
• Acceptance and Commitment Therapy
• Education Sessions
• Mindfulness-Based Interventions
• Problem Adaptation Therapy for Pain (PATH)
• Support Groups

i am feeling a bit triggered by all of this partly because of the history of this illness and because i have developed unrelated chronic pain that is not going away. I really wish that biomedical science was looking at biomarkers and more effective treatment than the BPS, self-management strategies and all that stuff we hear about.

I wonder how others feel about this report.

 

@Milo

Thank you for posting this. I've just read your highlights on it. Don't think I want to read the whole report - couldn't take that much BPS "stuff".

I'm assuming one of the reasons this task
force was struck was to help address the opioid crisis.

On the face of it, this report, sanctioned by Health Canada further allows practitioners to psychologize pain. To blame the patient, and to withhold any biomedical treatment.

We already have government sanction of psychologizing symptoms. This report appears to go further and re-confirm this.

How many more are going to be psychologized instead of getting a proper biomedical diagnosis that might improve quality of life, or indeed save their life?

My initial reaction to this report, is it's going to increase problems for people in chronic pain. Instead of looking for logical physical causes, this gives medics inclined to jump to the psychosocial conclusion, Further permission to do so.

(Everyone wants to be Freud - maybe without the cocaine habit though!)

 

This report also obscures or points away from the potential for environmental causes of pain. Consequences from industrial products. For example, developing ME and/or Fibromyalgia after living in a heavily pesticided area for decades.

 

Although I haven't read the whole report, I share your concerns.

I was thinking about this just the other day. In one of the current Swedish research studies, which is run by people at a pain clinic, they seem to be wanting to try to apply their pain treatment model to ME (only my personal impression/guess, they have not stated this themselves), and this worries me greatly. The research plan says:

"In particular, we want to test the hypothesis that patients with ME/CFS have findings suggesting neuropathic or nociplastic (formerly referred to as sensitized) pain that can be traced back to space restriction in the central nervous system which can cause interference with the cerebrospinal flow." (Their main hypothesis is that "ME/CFS in a significant proportion of patients can be explained by post-traumatic or other dysfunction in the craniocervical area".)

On their website they write the following about sensitized pain:

I desperately hope I'm completely wrong, but somehow I have a feeling that maybe the suggested ME treatment (if they conclude that their study supports their hypothesis) will be psychological and/or behavioural...

 

Another case of confusing cause and effect?

 

@mango

Sounds like another example of practitioners who say the health issue is physical, and it can be fixed with psychosocial therapies.

Even when we get biomarkers, and a lot more science, some of these types of therapists will still advertise they can fix ME and other diseases like Fibromyalgia with counseling, meditation, whatever.

 

Well this is a dumpster fire.

Looks like things are going to get much worse before they get better.

Of all the fields of science that should regress this badly, that it is medicine that is going all in on pseudoscience is seriously messed up.

Fuck it let's go balls to the wall and just bring fairies and leprechauns and all this stuff. At least it's creative.

 

Or a weird application of the 1% doctrine.

I absolutely accept that there is a psychosocial factor in pain. 1% sounds about right. But the 99% is complex and impervious to suggestion and you can't really BS your personal opinion effectively when you have to actually show your work, rather than just tell it. So there will be some time focusing on some insignificant factors because it's boring to hear people complain they're in pain.

 

Fifty years ago a man walked on the moon.
Fifty years ago WHO declared ME a neurological disease.

If people can walk on the moon, why can't we figure out diseases? Oh, I know.....because the powers that be don't want to solve diseases.

 

Yes, Doka, yes. I will now post what JFK said, and the time line he made.
===================

I therefore ask the Congress, above and beyond the increases I have earlier requested for space activities, to provide the funds which are needed to meet the following national goals:

First, I believe that this nation should commit itself to achieving the goal, before this decade is out, of landing a man on the moon and returning him safely to the earth. No single space project in this period will be more impressive to mankind, or more important for the long-range exploration of space; and none will be so difficult or expensive to accomplish. We propose to accelerate the development of the appropriate lunar space craft. We propose to develop alternate liquid and solid fuel boosters, much larger than any now being developed, until certain which is superior. We propose additional funds for other engine development and for unmanned explorations--explorations which are particularly important for one purpose which this nation will never overlook: the survival of the man who first makes this daring flight. But in a very real sense, it will not be one man going to the moon--if we make this judgment affirmatively, it will be an entire nation. For all of us must work to put him there.

[…]

This decision demands a major national commitment of scientific and technical manpower, materiel and facilities, and the possibility of their diversion from other important activities where they are already thinly spread. It means a degree of dedication, organization and discipline which have not always characterized our research and development efforts. It means we cannot afford undue work stoppages, inflated costs of material or talent, wasteful interagency rivalries, or a high turnover of key personnel.

--JFK, May 1961


https://www.presidency.ucsb.edu/documents/special-message-the-congress-urgent-national-needs
=====================================


The Americans went to the moon eight years later, July 1969. Exactly on target.

Is there a time line, a plan for conquering this disease? If anyone knows it, please post. It is tiring going from conference to conference (where researchers are on their time lines due to grants, and employing folks, etc.). From my sense, we are not on a time line. Is the cause money? Govt indifference obviously too. But every field works with a time line. Every field.

 

Thank you @Perrier for your post.

Would that it were so for ME:

"This decision demands a major national commitment of scientific and technical manpower, materiel and facilities, and the possibility of their diversion from other important activities where they are already thinly spread. It means a degree of dedication, organization and discipline which have not always characterized our research and development efforts. It means we cannot afford undue work stoppages, inflated costs of material or talent, wasteful interagency rivalries, or a high turnover of key personnel."

You said it: government indifference.

 

seems like the bps brigade want to drag medicine back to the dark ages and political expediency is helping them . Hopefully at some point the powerful and influential people will wake up to this . because an even greater number of sick people will be abused by such noxious idea's if they are not stopped.

 

A concept I noted on the CanLyme website: "farming disease for profit". This does make one think about denials, delays, willfull blindness by the powers that be, and who is benefiting from this.

 

The everlasting lightbulb springs to mind...

 

No need to attribute to malice when incompetence explains perfectly. Medicine is hard enough even when it's textbook perfect. The people who should be solving this problem are simply out of their depth, like everyone before them when they faced seemingly impossible problems, some of which are now routine.

More than anything, medicine has a lot of baggage, old myths and beliefs that are always first in line to fail all over again. The end result is indistinguishable from malice, but it's way more about protecting fragile egos than anything else. The human element is the weak point, only technology truly makes a difference. Here, with pain, everything would change if it could be measured. Until then, it's shouty matches about angels dancing on hairpins while sufferers waste away helplessly on the sidelines.

 

Thanks @rvallee - I wouldn't say it's malice - just perhaps those who profit from this, or see a chance to profit from this, wanting to continue their career, and keep reputation intact. It's just business as they say.

I don't think they have the individual in mind and are out to get them. As you say, lots of myths and baggage in medicine, as in many other areas of life.

Many seem to believe they are doing the best, and not doing harm, however the consequences of this for pwME, and other diseases may be tragic.

I do wonder when our voice is going to be heard and meaningful action taken.

 

I expect this is going to impact fibromyalgia. In ICD-11, the "chronic widespread pain" category (in the symptoms chapter) now includes fibromyalgia. In ICD-10, FM was in the chapter for "Diseases of the musculoskeletal system and connective tissue" in the section for "other soft tissue disorders." In ICD-11, FM is now just a symptom and since its included in chronic widespread pain, will have the same code and thus not be distinguishable. I understand Suzy Chapman highlighted the issue a few years back but I dont believe FM orgs followed up on it.

This file has the ICD-11 definition for chronic widespread pain.

 

@Milo as a fellow sufferer of non- ME related pain, the revelation that chronic pain causes significant distress, depression etc, just makes me want to punch someone. As we know, we get depressed/desperate/upset etc, and that is not the cause of the pain, but a reaction to living with it.

Having lived with daily disabling chronic pain for years, I have found a lot of empathy and support from a uk pain forum. It is interesting to me that in the 4 years I have been on there, although there are often calls for pain patients to fill in pain surveys to help researchers, every survey is heavily weighted towards the psychological attitude of the patient. Ditto Pain Management, whose philosophy seems to be that you make it clear to the patient that they will never recover, then discourage them from taking adequate medication, and tell you to 'Keep Calm and Carry On.'

When are these geniuses going to focus on the physical mechanism that leads to chronic pain, and how to mend it???

I am not throwing shade on the benefits of counselling/therapy and meditation- all of which I have found useful tools, but the most useful thing of all would be discovering how to make the pain stop!

I hope you are having one of the good days.
Helly

 

@Milo

A thought:

The Canadian Patient Safety Institute is supporting the development of the Patient Alliance for Patient Safety - I'm a member via Health Quality Ontario and we're close to 'launching'.

An org can be a member of PAPS, giving it a voice in PAPS direction and efforts - possibly including considering the safety of this Task Force Report.

Is there a (national) pain org that would be interested in exploring this idea? What do you think?

 

There are finally efforts being made to target pain. Because of the opioid crisis in the US, a huge project was funded, at about $1B, to advance pain research. I have little doubt it will invalidate every damn part of the psychosocial ideology and stop the madness that is being built around it.

Meanwhile the stupid will get stupider until it hits a very solid wall made of hard science. By far the biggest innovation that could happen is some way to objectively measure pain. Hard to say whether this project will succeed at that but it's hard to make significant progress without it. This would be the single biggest breakthrough in the field, as it would quickly invalidate all the nonsense that has creeped over the years.

But for those currently promoting this nonsense? Nothing will satisfy them. It's an ideology, impervious to facts. They will simply be made irrelevant and they will continue in their beliefs until the day they die, though without institutional support they will fade away. Progress made one funeral at a time.