1st ME/CFS Canadian Collaborative Conference

I wasn’t present at the meeting, and i missed a couple of presentations that were available online. There was one presentation where the presenter, a canadian physician, said you could heal yourself through food. (I have big doubts about that) They also mentioned they had a holistic program where the body, mind and spirit were taken care of (of course they do not do treatments, so essentially it is primarily a psycho-social program)

Another one raved on keto diet, while a registered dietician recommended to eat food from all the food groups (unless of yourse you are allergic or intolerant) because the nutrients of each food groups are essential to our body. So, which one is right?

The holistic model is and has done great harm. It allows our health care system to say we are receiving care when we are not. Some of the programs have a 2 year wait list, and what they offer is psycho-social stuff and rebranding ME as Central Sensitization Syndrome.

 

This:

https://twitter.com/user/status/992760284816257025


And this:

https://twitter.com/user/status/993205142693597184

 

There were some of those folk, for sure. They were in the minority.

 

The problem @JaimeS is that they take a lot of room in Canadian clinics which impedes progress. i hope these people stayed for the scientific meeting and that their practice will change for the better. The clinicians must stop their harmful narrative to patients, and must be agents of change in attracting basic science researchers and adopt a bench to bedside attitude. They must collaborate with the experts and the wider community and ensure patients are engaged not suppressed into passive role.

 

They may be in the minority at the conference but they make up a majority influence (and growing quickly) in the mainstream government run treatment facilities that claim to treat ME.

Here's one that had my blood boiling. In the presentation on the webcast, she never once referred to the illness as ME or Chronic Fatigue Syndrome, only chronic fatigue.

 

Change is hard, as if changing our lifestyle would cure us. So very wrong my blood is boiling too.

 

Me, too. It did seem like the preponderance of the unhelpful narrative was weighted on the clinical side (which is worrying for patients). I, too, hope they stayed for the whole conference and really listened rather than just forming arguments against.

Multiple times I passed people by the coffee or outside the conference hall debating vigorously. Many of these debates were between biomedical researchers and young clinicians, just starting out: before the paradigm goes beyond a paradigm and sets in as a belief system. This could not have happened if young clinicians within other paradigms (and some of their mentors) were not invited to attend. They were able to hear many points of view and judge for themselves which is more logical.

Clinical practice can't change if clinicians aren't invited to these events to hear a biomedical perspective and understand the most recent advances in science.

I spoke to Alexis Goth, and I believe she honestly took in what she was hearing at the conference. I hope she won't discard others' perspectives as "differing points of view".

 

Were the arguments the usual BPS versus biomedical?

 

Not to the degree I was expecting. I NEVER heard any patient-blaming, and no one was talking perfectionist tendencies OR laziness. It seemed to be between people who thought the disorder was caused by long-term stress (including infection, maybe), and people who thought psychological stress didn't necessarily play a role.

There was also debate re: therapies -- what was the best way to approach a patient's care. Some folk talking about how exercise can improve a patient's well-being if used cautiously. A few of the youngest therapists -- and I mean, early-mid 20s -- were sure it would essentially cure the patient. The older ones within the same paradigm already appeared to know better (than to say so? than to believe it? Who knows.)

These are just the debates I noted or engaged in, myself, and are not necessarily indicative of the whole landscape. So take with a grain of salt.

 

She never got the chance to explain the learned helplessness slide, i heard it was not included in the patient presentation. Hopefully thats a good sign, or perhaps it was fear of being made to look the fool.

 

Oh, dear.

 

You missed her clinician presentation?

 

No, actually. I saw it. But as a patient, I did have to get up and walk around a lot or my legs would go numb. (Ah, the wonders of ME circulation!) So it's possible I missed that sentence.

 

I heard @Alvin that someone may have caught that statement on camera afterwards.
Just trying to track it down.

 

She did speak about it?

 

Not in the presentation. I've heard it was afterwards to someone and it might have caught on camera, but like I said, we're still trying to track it down.

 

Then there is the case for childhood abuse and they are actually researching still today how many of the patient attending the Vancouver clinic have had ‘childhood adverse events’.

There is actually no medical care. All coping, holistic, psycho-social. Centrally-sensitized patients require no testing, and no testing= cheap = no problem.

Edit: link removed for now.

 

The prevalence of adverse childhood events is at about 50% which is also the incidence of ME.

I realize they're saying it contributes to, not that it causes, but still. It would have to be a VERY minor contribution for adverse childhood events to cause ME in less than 1% of the individuals who experience it.

 

Thats the thing, coincidence doesn't make causation, or i should say correlation is not causation even if they want to believe it is.

 

The issue I always think about regarding adverse childhood events is this . . . Those whose lives have not been derailed by chronic illness are less likely to do much "soul searching" in an attempt to establish what may have contributed to their current health concerns.