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Petition: Per Fink Should Not Spread Lies about ME at Columbia University!
Kalliope
Senior Member (Voting Rights)
Esther12
Senior Member (Voting Rights)
Looks like Shelby completely missed the point. I think Shelby's tweet is far more likely to harm advocacy efforts than Jen's!
I am not sure about that. It is necessary to remember the lengths to which Wessely et al went to say that they did not regard the condition as mental. It rather undermines the case if they then categorise it as mental.
Wonko
Senior Member (Voting Rights)
Nah - it least in the UK it is common practise to loudly proclaim one thing and then do another shortly afterwards e.g. 'I will not call a general election', 'I fully support xxxxx and there is no reason for them to resign' etc.
Esther12
Senior Member (Voting Rights)
Jen wasn't saying she thinks ME/CFS is a mental health condition, but:
"Psychosomatic medicine has tried to dismiss the valid criticisms of the patients it harms by accusing us of being anti-science @columbiamed @columbiapsych #ScienceNotStigma
Or of being constitutionally incapable of accepting we have a mental disorder (newsflash: most of us don’t care where you locate our illness, we just want effective treatments to live better lives!) #ScienceNotStigma"
She is absolutely right to say that some people have tried to dismiss legitimate concerns about research like PACE by saying that ME/CFS patients are motivated not by a desire to get to the truth or improve their treatment, but by an ideological opposition to any association with mental disorder even when the exact cause of symptoms in ME/CFS is poorly understood.
It seems ridiculous to respond to that by saying "How dare you Jen, we are every bit as unreasonable as they claim!"
Alvin
Senior Member (Voting Rights)
When people deny reality then anything is effective, even witchcraft
Since PACE is their claim to legitimacy and its a fraud they have nothing. And of course they have nothing, they are denying reality and selling blatant lies
JaimeS
Senior Member (Voting Rights)
Did link to it from the article -- that's the one Lipkin replied to personally with the "I don't know Per Fink, I haven't met Per Fink..." because they tried to say that Columbia and Per Fink stand shoulder to shoulder.
Predictiably, the Center for Infection and Immunity didn't like that so much.
Context is important. The idea that Jen, who was diagnosed with conversion disorder, would want ME to be labeled as a psychological is really, really misguided.
I saw a recent post describing people with ME as an internally-facing firing squad. We're in danger of becoming just that.
andypants
Senior Member (Voting Rights)
It's insane how fast one person reading one post the wrong way turns into a mob of angry people deciding that Jen is a traitor to all of humanity. This is not a problem unique to the MEsphere of course, but the sense of ownership some PwME feel over everything Jen says or does is a bit scary tbh.
I have also said that I do not care if ME is regarded as psychiatric or not, so long as its good science, rather than the atrocious science and non-science we see. The problem is that some parts of psychiatry are very tolerant of atrocious science. So its not the label that is the issue, its a particular subset of the medical profession. Those happen to often be psychiatrists. So the profession is dubious, and their published papers in psychogenic medicine, but the field by itself is less so.
Do not get me into a debate on the nature of mental illness though, I think its probably 100% a misnomer, and a category mistake.
In any case the current leading hypothesis, in my view, is that ME is probably due to polymorphisms of the IDO2 gene. What makes this science, as opposed to much of psychogenic medicine, is that its a very testable prediction. We might have an answer by this time next year.
PS Which makes ME a genetic disorder if this hypothesis is correct, its just often triggered by severe infection.
Do not get me into a debate on the nature of mental illness though, I think its probably 100% a misnomer, and a category mistake.
In any case the current leading hypothesis, in my view, is that ME is probably due to polymorphisms of the IDO2 gene. What makes this science, as opposed to much of psychogenic medicine, is that its a very testable prediction. We might have an answer by this time next year.
PS Which makes ME a genetic disorder if this hypothesis is correct, its just often triggered by severe infection.
Esther12
Senior Member (Voting Rights)
[Not about this specific case, I don't know the person involved at all].
I sometimes worry that the progress we've made recently has led to some people wanting to be a noisy voice attracting attention with their outrage, even if they do so in a way that makes advocacy efforts more difficult. Trying to appeal to people with ME/CFS, or those who are already on-side, with strong words about what we deserve or how badly we've been treated is quite different to doing the difficult work of actually persuading people who are currently (for example) supportive of PACE/Wessely/etc that we are right and they are wrong. I sometimes worry that social media can encourage this too. To get a lot of 'likes' on a post it's best to be simplistic, strident, and appeal to the instincts of the in-group most likely to see it. If that's viewed by the writer as some sign of a good post, we risk being encouraged to behave on-line in a way that goes against the interests of effective advocacy work.
I sometimes feel like the remarkable success the PACE lot had spinning their results and presenting critics as anti-science bullies was quite good for the culture of ME/CFS advocacy. While it certainly generated a lot of anger, it also forced people to recognise how stigmatised we were, and cut off a lot of the normal approaches of political advocacy, forcing us to adopt approaches that were better suited for challenging the medical Establishment, particularly now that medicine has come to be viewed as 'evidence-based' and a part of science. Maybe now that the PACE lot are on the back-foot we're seeing some patients get over-confident and forget how careful we need to be if we're to overcome the challenges we face? I also suspect that the loss of one dominant forum was a blow.
I sometimes worry that the progress we've made recently has led to some people wanting to be a noisy voice attracting attention with their outrage, even if they do so in a way that makes advocacy efforts more difficult. Trying to appeal to people with ME/CFS, or those who are already on-side, with strong words about what we deserve or how badly we've been treated is quite different to doing the difficult work of actually persuading people who are currently (for example) supportive of PACE/Wessely/etc that we are right and they are wrong. I sometimes worry that social media can encourage this too. To get a lot of 'likes' on a post it's best to be simplistic, strident, and appeal to the instincts of the in-group most likely to see it. If that's viewed by the writer as some sign of a good post, we risk being encouraged to behave on-line in a way that goes against the interests of effective advocacy work.
I sometimes feel like the remarkable success the PACE lot had spinning their results and presenting critics as anti-science bullies was quite good for the culture of ME/CFS advocacy. While it certainly generated a lot of anger, it also forced people to recognise how stigmatised we were, and cut off a lot of the normal approaches of political advocacy, forcing us to adopt approaches that were better suited for challenging the medical Establishment, particularly now that medicine has come to be viewed as 'evidence-based' and a part of science. Maybe now that the PACE lot are on the back-foot we're seeing some patients get over-confident and forget how careful we need to be if we're to overcome the challenges we face? I also suspect that the loss of one dominant forum was a blow.
JaimeS
Senior Member (Voting Rights)
Truer words @Esther12.
I also think that ME folk have some hard-earned distrust of governmental organizations, and the more effective a group becomes at creating change, the more likely they are to be considered worthy of the same reflexive distrust. I understand the impulse -- but it puts barriers in the way of advocacy efforts like protest, medical education, and getting more funding for research and treatment. There are plenty of ways to engage and fix important errors without mud-slinging.
The culture of alternative facts hasn't helped. Repeat a lie loudly and long and people believe. Throw in some insults and name-calling and bystanders begin to believe there has to be something legitimate somewhere to have elicited such a passionate response.
We're all tired and brain-fogged and it's hard to double-check everything everyone is saying. Easier to find someone who elicits the right emotional response within us, makes us feel powerful, and give them our wholehearted trust.
It's not just patients who read these tweets or followed the forum meltdown in real time. It's not fair that we have to be calmer, more collected, more backed by facts than the scientists who skewer us. But it is true, if we want the public to begin to trust our collective voice.
Everything we say is public, and this is still a PR crisis.
I also think that ME folk have some hard-earned distrust of governmental organizations, and the more effective a group becomes at creating change, the more likely they are to be considered worthy of the same reflexive distrust. I understand the impulse -- but it puts barriers in the way of advocacy efforts like protest, medical education, and getting more funding for research and treatment. There are plenty of ways to engage and fix important errors without mud-slinging.
The culture of alternative facts hasn't helped. Repeat a lie loudly and long and people believe. Throw in some insults and name-calling and bystanders begin to believe there has to be something legitimate somewhere to have elicited such a passionate response.
We're all tired and brain-fogged and it's hard to double-check everything everyone is saying. Easier to find someone who elicits the right emotional response within us, makes us feel powerful, and give them our wholehearted trust.
It's not just patients who read these tweets or followed the forum meltdown in real time. It's not fair that we have to be calmer, more collected, more backed by facts than the scientists who skewer us. But it is true, if we want the public to begin to trust our collective voice.
Everything we say is public, and this is still a PR crisis.
Hoopoe
Senior Member (Voting Rights)
Did you say nanoneedle biosensor?
Oh my gosh, you read my mind!
There are others of course, including the five tests from 1940-1954, and many since as I did not keep investigating dates.
The issue here is that all tests have limited usefulness up till now, being positive in only up to about 95% of cases, but more typically only 40-60%. We need really good tests, or test combinations.
Moderator note:
Some posts have been moved to this new thread:
Parkinsons' Disease, biomarkers and psychosomatic diagnoses
(if any posts have ended up in the wrong place, please report them!)
Some posts have been moved to this new thread:
Parkinsons' Disease, biomarkers and psychosomatic diagnoses
(if any posts have ended up in the wrong place, please report them!)