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DigitalDrifter
Senior Member (Voting Rights)
On page 4:
Does anyone know who was the Vice President of the ME Association back then?Simon said:
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JaimeS
Senior Member (Voting Rights)
No, but some historical context.
In the early 1990s, one of the key accusations against people with ME was that they were merely lazy. It's fallen out of favor a bit such that it's no longer the primary argument; now we're malingering or perfectionistic or did not eat the right balance of fruits and vegetables or pray to the right gods or what-have-you, and in another five years there'll be some new favored attribution.
But it makes sense that people with ME started protesting that they were the Very Embodiment of the Protestant Work Ethic in response. Working too hard leading to ME had to sound more noble and self-sacrificing than laziness. And while I'm being tongue-in-cheek, I can certainly see myself taking that kind of epistemological 'out' in those same circumstances, especially early in the illness when the symptoms themselves felt like a consistent rebuke from the universe.
So I wouldn't be too hard on whoever it was.
Also keep in mind this is actually Wessley's interpretation of what the VP of the ME Association said. Wessley can say exactly what he says, above:
If the VP had actually said, "people with ME are far from lazy, and many are the last people to take time off of work for no good reason".
Wessley contextualizes it to present a very specific impression, but that does NOT mean that is the impression the ME Association rep meant to convey -- or the impression we ourselves would have by reading that Vice President's entire statement.
Mithriel
Senior Member (Voting Rights)
The 70's/80's were also the time when convalescence was being dropped and doctor's were being encouraged to get people back to work as quickly as possible. We had a local convalescent hospital that was closed about then. There was a feeling that not taking time to recover from an infection or trauma could lead to chronic illness.
The narrative that people who got ME were the ones who did not take time off work when ill should be seen in this context as well.
Another thing twisted to death by BPSers
The narrative that people who got ME were the ones who did not take time off work when ill should be seen in this context as well.
Another thing twisted to death by BPSers
ladycatlover
Senior Member (Voting Rights)
I don't know what weasel was blathering about concerning "Vice President of ME Association". If he's talking about the UK MEA he's talking out of his (blither). So far as I understand MEA doesn't have "President", Vice or otherwise. They might have a Chair? VP sounds much more American to me, or maybe Oz, but I don't really know. Perhaps @Russell Fleming could confirm or refute? Or any of our Australian friends?
JaimeS
Senior Member (Voting Rights)
There was also an ME Action in the 1980s, or at least something that people called ME Action for short.
I have the incredibly confusing impression that perhaps Action for ME used to be called ME Action.
It's part of why I always do the hashtag & combine -- #MEAction -- because there are so many orgs with similar names!
Sly Saint
Senior Member (Voting Rights)
rvallee
Senior Member (Voting Rights)
"Excessive testing"
Oh, yeah. Totally. We are overwhelmed by testing. So many tests being done, thoroughly and there are so many specialists involved they have to rent a larger conference room to allow them all in the same place. And in such quick succession, too. We just flip from test to test breathlessly.
I may just be some non-expert on the topic of medicine, but I fail to see how it's beneficial for a profession dealing with life and death to simply allow some of its licensed members to just make stuff up, to make claims against all evidence. I don't understand how anyone thinks this is the right way to do things, especially when hindsight generally shows it was the biggest obstacle to solving the problem.
JaimeS
Senior Member (Voting Rights)
'The problem' isn't the illness, according to the med industrial complex. The problem is costs.
There are doctors who genuinely and deeply care about helping us and researchers who desperately want to cure ME. I'm not talking about individual motivation; I'm talking about the way those who stand to lose the most from drops in profits are the ones who have crafted the system.
For many, their work isn't their calling -- it's their way to survive, to make money. Making the most money, more money than their acquaintances or their business competitors, is how they judge whether or not they've done a good job.
So "it helps the patient" is sometimes besides the point and sometimes goes directly against the envisioned goal. Just look at the recent presentation that made its way around social media positing that drug companies shouldn't try and cure chronic disease -- they should increase their profit margins by producing a potentially harmful drug that the patient has to take -- forever.
And if the patient loses access? Why, that's a damned shame.
Remember how a few posts back, I said that if someone's actions seem inexplicable and counter to the goal, perhaps they don't actually have the same goal? It's not about us, for a lot of these people. It's about them.
ladycatlover
Senior Member (Voting Rights)
Yes as you surmise above (though not in my quote) ME Action is now Action for ME. It has gone through various names, as @Sly Saint explains above.
But the ME Association has always been the MEA (and not ME Action or Action for ME), and that is who weasel SAID he was quoting. He's sloppy over his quotes, just as (IMO) he is in research. Oh, he sometimes calls MEA "the ME Society", which name I understand was also registered by MEA though they don't use it. I'm guessing to protect against someone else taking it on.
I may have missed someone else's similar comments regarding the list of tests to be avoided.
Here are my points:
1) it seems odd, or suspicious to specifically note tests that should not be done - of course this is to point physicians away from tests known to indicate physiological dysfunction for pwME; what do doctors think of this; does it ring any
alarm bells, or raise any questions for any of them? Or would most not question this seemingly odd guidance?
2) With guidelines for other diseases, are there also warnings about which tests not to do? I don't think so, but I'm not certain. I don't know what doctors are told, but when I look up websites about other diseases, these sites
have never included warnings about a list of tests to stay away from.
If a patient has neurological or immune system symptoms, normally, in a logical world, we would expect some neurological and immune system testing be done. However, we know this is not the case with ME. Many misdiagnoses can and do happen. What twigs doctors to ignore these symptoms? I am aware they have flow charts to follow re diagnoses. However, does patient gender play a role? Yes, we know there is gender bias in medicine. The mention of fatigue? Yes, we know fatigue is often conflated with depression in medical training. The number of symptoms noted? This might be considered a sign of hypochondria. Don't
the BPS crowd say the larger the list of symptoms, the greater the likelihood of hypochondria?
If one has a fall, and they have a bone sticking out of their leg as a result, physicians aren't prevented from or advised against providing imaging. They are if they suspect ME.
Physicians may choose incorrectly in ignoring neurological and immune system symptoms. These directives, to withhold proper testing are playing Russian roulette with citizens' health. Because of the directives involved in ignoring the health problems for pwME, which is appallingly cruel, many others can also be caught in this web.
Here are my points:
1) it seems odd, or suspicious to specifically note tests that should not be done - of course this is to point physicians away from tests known to indicate physiological dysfunction for pwME; what do doctors think of this; does it ring any
alarm bells, or raise any questions for any of them? Or would most not question this seemingly odd guidance?
2) With guidelines for other diseases, are there also warnings about which tests not to do? I don't think so, but I'm not certain. I don't know what doctors are told, but when I look up websites about other diseases, these sites
have never included warnings about a list of tests to stay away from.
If a patient has neurological or immune system symptoms, normally, in a logical world, we would expect some neurological and immune system testing be done. However, we know this is not the case with ME. Many misdiagnoses can and do happen. What twigs doctors to ignore these symptoms? I am aware they have flow charts to follow re diagnoses. However, does patient gender play a role? Yes, we know there is gender bias in medicine. The mention of fatigue? Yes, we know fatigue is often conflated with depression in medical training. The number of symptoms noted? This might be considered a sign of hypochondria. Don't
the BPS crowd say the larger the list of symptoms, the greater the likelihood of hypochondria?
If one has a fall, and they have a bone sticking out of their leg as a result, physicians aren't prevented from or advised against providing imaging. They are if they suspect ME.
Physicians may choose incorrectly in ignoring neurological and immune system symptoms. These directives, to withhold proper testing are playing Russian roulette with citizens' health. Because of the directives involved in ignoring the health problems for pwME, which is appallingly cruel, many others can also be caught in this web.
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ahimsa
Senior Member (Voting Rights)
"Excessive testing"
Oh, yeah. Totally. We are overwhelmed by testing. So many tests being done, thoroughly and there are so many specialists involved they have to rent a larger conference room to allow them all in the same place. And in such quick succession, too. We just flip from test to test breathlessly.
*catches breath*
Thanks for my first good laugh of the day.
JaimeS
Senior Member (Voting Rights)
You can only buy this if you've been raised up in the BPS paradigm. Some docs in the US are/were, so they're not exempt -- it's just not all of them. I've had doctors express gobsmacked shock when I tell them this, followed by the side-eye:
like, you're lying to me, that cannot possibly be written down in any protocol anyplace for anything!No, and that further solidifies ME as a 'special' disease with 'special' rules.
There are a lot of reasons for stigma in ME.
I could write a paper.
Actually, I could write a paper a month on this disease.
Unfortunately, a girl's gotta eat.
Continuing about the tests to avoid:
- it would be interesting to know when this list was added to the NICE Guidelines in relation to the rest of the bushwa about ME (CBT/GET)
- was the list periodically updated as more successful biomedical testing came to light
- clearly some in the BPS camp are indeed paying attention to biomedical research
- did the prohibited list come about because uppity patients were finding out about this testing?
- speaking of "uppity patients", I watched a BBC news item aired on a US public TV channel about parents in California getting less vaccinations for their kids. One speaker they had on was an American philosophy prof who said something like patients are arrogant and think they know more than their doctors. Can't find that program link, but it seemed like an excellent and relevant example for our community.
- it would be interesting to know when this list was added to the NICE Guidelines in relation to the rest of the bushwa about ME (CBT/GET)
- was the list periodically updated as more successful biomedical testing came to light
- clearly some in the BPS camp are indeed paying attention to biomedical research
- did the prohibited list come about because uppity patients were finding out about this testing?
- speaking of "uppity patients", I watched a BBC news item aired on a US public TV channel about parents in California getting less vaccinations for their kids. One speaker they had on was an American philosophy prof who said something like patients are arrogant and think they know more than their doctors. Can't find that program link, but it seemed like an excellent and relevant example for our community.
JaimeS
Senior Member (Voting Rights)
Nah, just to what patients were asking them to test for.
The BPS gang ignore patients' info/requests/symptoms; that's their thing/ MO. I would think they would keep an eye on biomedical evidence, in order that they can make negative statements about it. I don't think they give any credence to what patients say about testing.
They have acknowledged abnormal
physiological findings from evidence based research, but always dismiss them as
trivial, not reliable etc.
They only care about what patients say if pwME can be portrayed as "vexatious".
For clarification, BPSers are only making note of biomedical evidence based ME research, in order to advise on what testing and research should be ignored. As we know they are not incorporating this research into their own work with pwME. That would very definitely and adversely effect the career, reputation, and cash flow if they really saw ME.
They have acknowledged abnormal
physiological findings from evidence based research, but always dismiss them as
trivial, not reliable etc.
They only care about what patients say if pwME can be portrayed as "vexatious".
For clarification, BPSers are only making note of biomedical evidence based ME research, in order to advise on what testing and research should be ignored. As we know they are not incorporating this research into their own work with pwME. That would very definitely and adversely effect the career, reputation, and cash flow if they really saw ME.
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JaimeS
Senior Member (Voting Rights)
Chris Burton is on the NICE committee and JE recently posted one of his papers. I felt like the convo I wanted to have on that actually belonged here rather than there, where it might have derailed the thread -- he even talks about being cautious re: 'don't test patients' and makes some identical points to mine on the matter before veering away.
From: Can we explain medically unexplained symptoms?
Christopher Burton
Family Practice, Volume 31, Issue 6, 1 December 2014, Pages 623–624, https://doi-org.libproxy.ucl.ac.uk/10.1093/fampra/cmu067
17 November 2014
Citation, please? Annnd bacteria don't still have to be present for there to have been lasting damage. Annnnd there's more than one kind of pathogen... and there are antibiotic-resistant pathogens. Annnnd we could have mistaken the cause.
Huh.
Well, but here we get into the 'it sounds reasonable' but it isn't. How is the clinician to identify who has a syndrome that is, as-of-yet, unexplained -- and who has 'severe MUS'?
This is something I haven't mentioned on the forums a great deal, but I noted a distinct, inverse correlation between the severity of my symptoms and the quality of care I received. The sicker I felt, the more likely a clinician was to dismiss my symptoms and retreat behind a shell to -- I suppose -- avoid empathetic distress. If I showed up relatively well and spoke articulately about severe symptoms, I was taken seriously and treated with empathy. My feeling is, the more severe the presentation, the more likely a clinician is to diagnose a patient with 'severe MUS' and use this as an escape hatch away from the problem *cough*patient*cough*.
Another thing I've noticed, on MedTwitter: the emphasis on "what the patient really wants is to feel heard". More than they want decent care, I guess.
Look, I'm a fan of politeness and warmth as much as the next person, but as an advocate, I end up talking about the disease a great deal, so it's not as though it's all bottled up inside of me, just waiting on a clinician's sympathetic ear. Last time I met someone who asked me what I did for a living, I spaced out for five minutes, and when I came back to, I'd finished an apparently coherent and stirring thesis on the PACE trial.
Now I want to read (11) and (12).
This is an incorrect definition of central sensitization so far as I am concerned. But he may be reading bad literature on this idea, which has been co-opted by BPS theorists and twisted out of all recognition. @Michiel Tack ...
I hope the ANS doesn't become the new "HPA axis" -- that is, a handwavey strawmannish explanation in which 'stress' takes the place of a network of complex biological processes.
Whelp. I'm going to find those references so people can investigate the stated claims:
[Edit: I changed all the quotes because it looked like JE meant/was saying them! Shifted to regular quotes rather than user-quotes]
From: Can we explain medically unexplained symptoms?
Christopher Burton
Family Practice, Volume 31, Issue 6, 1 December 2014, Pages 623–624, https://doi-org.libproxy.ucl.ac.uk/10.1093/fampra/cmu067
17 November 2014
Citation, please? Annnd bacteria don't still have to be present for there to have been lasting damage. Annnnd there's more than one kind of pathogen... and there are antibiotic-resistant pathogens. Annnnd we could have mistaken the cause.
Huh.
Well, but here we get into the 'it sounds reasonable' but it isn't. How is the clinician to identify who has a syndrome that is, as-of-yet, unexplained -- and who has 'severe MUS'?
This is something I haven't mentioned on the forums a great deal, but I noted a distinct, inverse correlation between the severity of my symptoms and the quality of care I received. The sicker I felt, the more likely a clinician was to dismiss my symptoms and retreat behind a shell to -- I suppose -- avoid empathetic distress. If I showed up relatively well and spoke articulately about severe symptoms, I was taken seriously and treated with empathy. My feeling is, the more severe the presentation, the more likely a clinician is to diagnose a patient with 'severe MUS' and use this as an escape hatch away from the problem *cough*patient*cough*.
Another thing I've noticed, on MedTwitter: the emphasis on "what the patient really wants is to feel heard".
More than they want decent care, I guess.Look, I'm a fan of politeness and warmth as much as the next person, but as an advocate, I end up talking about the disease a great deal, so it's not as though it's all bottled up inside of me, just waiting on a clinician's sympathetic ear. Last time I met someone who asked me what I did for a living, I spaced out for five minutes, and when I came back to, I'd finished an apparently coherent and stirring thesis on the PACE trial.
Now I want to read (11) and (12).
This is an incorrect definition of central sensitization so far as I am concerned. But he may be reading bad literature on this idea, which has been co-opted by BPS theorists and twisted out of all recognition. @Michiel Tack ...
I hope the ANS doesn't become the new "HPA axis" -- that is, a handwavey strawmannish explanation in which 'stress' takes the place of a network of complex biological processes.
Whelp. I'm going to find those references so people can investigate the stated claims:
[Edit: I changed all the quotes because it looked like JE meant/was saying them! Shifted to regular quotes rather than user-quotes]
Inara
Senior Member (Voting Rights)
That would be quite interesting. Would you list some of your reasons for stigma of ME?
Good idea, @Inara and @JaimeS, how about a thread on reasons for stigma of ME?
Some reasons:
- gender bias
- ME not included in medical training
- denigrating papers, talks/presentations - - stupid/misleading disease name
- constantly called a syndrome, and not a disease,
- zilch for biomedical funding
- most of the funding going into BPS research
- ridicule of serious biomedical researchers
- pandering to the disability insurance industry/collegial relationship with powerful anti-ME practitioners
- most patients too sick to rise up and fight
- pwME unaware of the big picture
- ETC!
I'm sure there are more!
Some reasons:
- gender bias
- ME not included in medical training
- denigrating papers, talks/presentations - - stupid/misleading disease name
- constantly called a syndrome, and not a disease,
- zilch for biomedical funding
- most of the funding going into BPS research
- ridicule of serious biomedical researchers
- pandering to the disability insurance industry/collegial relationship with powerful anti-ME practitioners
- most patients too sick to rise up and fight
- pwME unaware of the big picture
- ETC!
I'm sure there are more!