Video clip of a Australasian conference on MUS, mentions ME.

Going from bad to worse: big NZ GP conference happening in Rotorua this week. Speakers include the three we've been discussing here: Chris Kenedi, Kristy Bolter and Megan McEwen. As if that wasn't enough there's also Mel Abbott (Empower, a version of the Lightning process). http://www.gpcme.co.nz/speakers.php

Can someone please stop these people, with or without the help of paper circles, just STOP them!!!

According to the conference website (http://www.gpcme.co.nz) there'll be another event in Christchurch in August, this one without the first three but with Mel Abbot who has 3 sessions, one of them for nurses (http://www.gpcme.co.nz/south/programme.php).

[Posted this in both the "News from New Zealand and the Pacific Islands" and the "Video clip of a Australasian conference on MUS, mentions ME" threads.]
 
Jonathan Edwards said:
So this is the plughole lady I think.

She is seriously out of touch with reality.
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I think you are discounting her clearly miraculous achievements.

For instance, the miracle of creating a robust bank account and sense of superiority directly from providing substantial negative value to society.

Perfectly in line with present reality. Unfortunately, it seems like all of us here have missed the boat.
 
@Snow Leopard

Yes, why indeed would physicians care about any disease? They as you say pay attention to practice guidelines. Not according to a physician I heard on the radio June 17 who said experienced doctors sometimes ignore the practice guidelines. This was in relation to pulling life support for traumatic brain injury
As for trying to educate doctors, do we give up? Wait for the powers that be to inoculate them with the fact that pwME have a serious physical disease, and should be treated with respect, not as low life's?

This shift in knowledge and attitude has taken many decades. Since 1934 if one wants to back that far.

What would you suggest pwME do to bring about progress?
 
Michiel Tack said:
A lot of doctors (pretty much all doctors in Belgium) think CFS is just long-lasting fatigue or something like a burnout. So if they are directed to the CD website or IOM report they'll see that the consensus view by experts is that this is a severely disabling and chronic illness and that researchers suspect an underlying pathology and are studying possible clues pointing to the immune system, metabolism etc.
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Whenever I handed over to my doctors a summary of what German charities judged as relevant biomedical research on ME, since 2015 also the IOM report, most doctors understood that as evidence of me having unhelpful illness beliefs whereas one understanding neurologist advised me to not enclose such summaries with applications for disability assessments and the like.

So like others here I think with referring to the IOM report or other biomedical research it's impossible to win an argument over the question whether there is sufficient evidence to prove that ME has a biomedical pathophysiology. It seems to me that is the reason why many discussions on this topic are not helpful:



In this case, I m not sure if there could be a helpful discussion with this Critical Care Physician at all--he seems to see CG Jung's childhood memories as evidence for a possible psychogenic cause of ME:



I think though there are more reasonable doctors who won't be convinced by the IOM report either.

For example, I am not sure if the Kaiser Permanente physician briefed by @Webdog and @dave30th would have been convinced by mainly referencing the IOM report. https://www.s4me.info/threads/trial-by-error-kaiser-permanente-changes-course.8544/

Some forum members repeatedly suggested other ways to discuss this topic. I am not able to find or summarize these suggestions at the moment, but I think the main point was to stress that the specific symptom pattern pwME present with strongly suggests an illness entity that doesn't fit otherwise proposed psychogenic illness models. Furthermore, studies failed to show sufficient evidence that treatments targetting mental issues, be it with antidepressants, CBT or GET, are effective.

Thes suggestions still don't prove anything, but in a discussion could be aknowledged as reasonable points at least.
 
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DokaGirl said:
What would you suggest pwME do to bring about progress?
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Gather a lot more data about the practises, attitudes, knowledge and patient outcomes in standard practise (in a way that doesn't allow those physicians to report in a deceptive way).

I'm proposing a lot more study of physicians themselves. Physicians should be experimented upon, not just patients.
 
@Jonathan Edwards

The 2 day CPET may indicate an abnormality for pwME. For me that's a long ways from repeatedly being told there's nothing wrong, and I'm totallly healthy, even though I feel I have the flu 24/7, with a hangover, and having just run a
marathon. And all of this for 30 years plus.

Agreed, this of course is not enough. We need to dig deeper. It seems that despite several abnormalities being found and replicated (e.g. NK cells) medicine is very reluctant to recognize ME as a legitimate physical disease. I wonder how many more years this will take. Some will probably never acknowledge ME as biological.
 
MSEsperanza said:
Whenever I handed over to my doctors a summary of what German charities judged as relevant biomedical research on ME, since 2015 also the IOM report, most doctors understood that as evidence of me having unhelpful illness beliefs whereas one understanding neurologist advised me to not enclose such summaries in applications for disability assessments and the like.

So like others here I think with referring to the IOM report or other biomedical research it's impossible to win an argument over the question whether there is sufficient evidence to prove that ME has a biomedical pathophysiology. It seems to me that is the reason why many discussions on this topic are not helpful:



In this case, I m not sure if there could be a helpful discussion with this Critical Care Physician at all--he seems to see CG Jung's childhood memories as evidence for a possible psychogenic cause of ME:



I think though there are more reasonable doctors who won't be convinced by the IOM report either.

For example, I am not sure if the Kaiser Permanente physician briefed by @Webdog and @dave30th would have been convinced by mainly referencing the IOM report. https://www.s4me.info/threads/trial-by-error-kaiser-permanente-changes-course.8544/

Some forum members repeatedly suggested other ways to discuss this topic. I am not able to find or summarize these suggestions at the moment, but I think the main point was to stress that the specific symptom pattern pwME present with strongly suggests an illness entity that doesn't fit otherwise proposed psychogenic illness models. Furthermore, studies failed to show sufficient evidence that treatments targetting mental issues, be it with antidepressants, CBT or GET, are effective.

Thes suggestions still don't prove anything, but in a discussion could be aknowledged as reasonable points at least.
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The NIH really dropped the ball with the IOM report. It was published, but led to absolutely no significant changes, leading people to free to conclude that the report said whatever they want it to say. The CDC only published the changes as for information purposes only, not an official change in position. Cowardice.

It's like an investigative report laying out extensive evidence of criminal behavior but refusing to indict or recommend charges for technical reasons. When nothing happens as a consequence of otherwise clear conclusions, then people assume that those conclusions are probably just an opinion and read what they want from the evidence and even through clear statements.

On a side note, this jerk on Twitter is a poster-boy for "I am so very smart". Sharpe can rest easy knowing that people with the exact same lack of judgment mixed with utmost confidence in their inexistent skill will take over his work and rhetoric.
 
@Ravn what a freaking nightmare! This is terrible that this BPS nonsense will be spread so far! Does no one attending have any critical thought capabilities? Does no one ask "Show me the data?"

Frankly I think this nonsense won't be curtailed, or at least significantly slowed without legal proceedings. Something the community neither seems to have the appetite for, nor the finances. Even when deeper proof is found, these "practitioners", will cling on, raking in money for ridiculous and harmful practices undeserving of the lable pseudoscience.
 
@rvallee

I totally agree about the NIH and CDC dropping the ball re the IOM report. I wouldn't want those guys to try and market anything for me.

It's passive to just roll out the info and let it sit there, hoping many will come across it and go: "Wow, that is so enlightening about ME! I'm going to learn as much as I can and diagnose and treat to the best of my ability given these guideline!" This doesn't happen. Which is why some like myself try to pass this info along, with mixed results.

I'm starting to wonder who physicians do listen to. Not always the practice guidelines, as a recent CBC Radio program said. They don't read journals. Some don't listen to their patients, some ignore their college's regulations, some ignore common sense. Some ignore their training. What's left? I have read some base their knowledge about "cfs" on articles in popular literature. Maybe we should get more articles into hobby and homemaker mags. Maybe that would help!

Recovery from much local anesthetic, and other necessary, but evil drugs today after surgery. Maybe it's affected my mood! Ha!
 
DokaGirl said:
@Ravn what a freaking nightmare! This is terrible that this BPS nonsense will be spread so far! Does no one attending have any critical thought capabilities? Does no one ask "Show me the data?"

Frankly I think this nonsense won't be curtailed, or at least significantly slowed without legal proceedings. Something the community neither seems to have the appetite for, nor the finances. Even when deeper proof is found, these "practitioners", will cling on, raking in money for ridiculous and harmful practices undeserving of the lable pseudoscience.
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The whole psychosocial thing seems to be a magnet for the worst gullible people in the profession. They are the ones who in a time past would have railed against the germ theory of disease, would have been offended, OFFENDED, at the suggestion that their hands are dirty and that they should clean them before sticking them in someone's body. They learned about phlogistons and by god they will keep on believing in them until their death bed.

Honestly it would make for a perfect Thanos filter: just fire everyone foolish enough to be part of this obvious nonsense and no matter how many people this removes from medicine, the net effect would be highly positive. It's a who's who of who should never have worked in medicine in the first place, people with no more judgment than a rock.

But the more likely outcome is more of this until it collapses under the weight of its failure, likely many years to come. Because the history of humanity has been of taking every mistake to its maximum extent and going on for a while until it's just too embarrassing to let the fools continue discrediting the whole profession. Rinse, repeat. Mistakes have to be taken to their maximum limit before they are acknowledged, and even that isn't always enough. No matter how many deaths or how much suffering, they have chosen a direction and will sail it to its bitter sink.

If only there was some sort of idea or principle in medicine, based around the principle that whatever you do it should not be harmful. Oh well, it sounds like a good idea in theory but it would never work in practice, unfortunately.
 
DokaGirl said:
What's left? I have read some base their knowledge about "cfs" on articles in popular literature. Maybe we should get more articles into hobby and homemaker mags. Maybe that would help!
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A local GP I saw when my usual GP was away had learned all he knew about ME/CFS from Private Eye, a UK magazine. Fortunately, it was an article criticising the PACE trial that he had read, so we got along fine.
 
Do some employing the BPS model promote hate and harm? Is there a portion of this type of work that encourages hatred of clients, and potentially harmful practices? Or is this a misunderstanding of the intent of some practitioners?

Or is this a more general outcome and practice in this field? Has it evolved from previous well meaning intentions and practices, to something new tha
stigmatizes and dehumanizes large sections of humanity, in order to reduce them to easily manipulated objects? Or have a significant percentage of BPS theories and treatments always been very harmful, and inhumane?

Is naively taking psych 101 in university the start of a downhill slide into a pit of vipers?
 
MSEsperanza said:
Whenever I handed over to my doctors a summary of what German charities judged as relevant biomedical research on ME, since 2015 also the IOM report, most doctors understood that as evidence of me having unhelpful illness beliefs whereas one understanding neurologist advised me to not enclose such summaries with applications for disability assessments and the like.

So like others here I think with referring to the IOM report or other biomedical research it's impossible to win an argument over the question whether there is sufficient evidence to prove that ME has a biomedical pathophysiology. It seems to me that is the reason why many discussions on this topic are not helpful:



In this case, I m not sure if there could be a helpful discussion with this Critical Care Physician at all--he seems to see CG Jung's childhood memories as evidence for a possible psychogenic cause of ME:



I think though there are more reasonable doctors who won't be convinced by the IOM report either.

For example, I am not sure if the Kaiser Permanente physician briefed by @Webdog and @dave30th would have been convinced by mainly referencing the IOM report. https://www.s4me.info/threads/trial-by-error-kaiser-permanente-changes-course.8544/

Some forum members repeatedly suggested other ways to discuss this topic. I am not able to find or summarize these suggestions at the moment, but I think the main point was to stress that the specific symptom pattern pwME present with strongly suggests an illness entity that doesn't fit otherwise proposed psychogenic illness models. Furthermore, studies failed to show sufficient evidence that treatments targetting mental issues, be it with antidepressants, CBT or GET, are effective.

Thes suggestions still don't prove anything, but in a discussion could be aknowledged as reasonable points at least.
Click to expand...


I think that when the discussion is about whether ME/CFS should be classed as 'physical' or 'psychological' then patients arguing against a 'psychological' classification are likely to be on the back foot and end up wasting a lot of their time doing little more than encouraging an unhelpful framing of the controversy.

It's almost always a discussion that goes badly.

If people want to try to improve the way ME/CFS is viewed and treated then it's worth focussing on the specific problems with things like PACE, the way patients are treated, etc, and trying to keep that discussion away from 'physical' or 'psychological' labels.

That twitter discussion with Matt Strass shows how even someone who doesn't know what they're talking about can easily bat away arguments from people when it is framed as them asserting ME/CFS is a physical illness. To the extent that the IOM report has encouraged people to make those claims, I think it has been unhelpful for us.
 
RoseE said:
that was what I have been thinking. We have some great public lawyers here... e.g. https://www.chenpalmer.com/expertise/public-law-litigation/
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I am not legally trained, but I do know most law suits for damages have failed. I also know a great many suits for insurance and medical coverage have succeeded. The grounds for a suit, and the type of suit, are specific. There are a great many protections under law afforded doctors.

I have often wondered if we should be considering entirely different legal action, such as injunctions.
 
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