5 ms·

I'm a celiac and it is pretty annoying to hear people suggest something is psychological or (as it is often put) placebo. What makes it a red flag that people w

I'm a celiac and it is pretty annoying to hear people suggest something is psychological or (as it is often put) placebo. What makes it a red flag that people want recognition for a condition? Does it make them snowflakes if they want people to be aware that they are sick in a way that other people don't regularly experience? I would love for some recognition to the idea that food can make you sick, as I'm sure people with CFS would like awareness, more research, and solutions to their issues. Until you have evidence that it is purely psychological I would refrain from suggesting such.

jessriedel 8y ago
> Until you have evidence that it is purely psychological I would refrain from suggesting such. If there are a bunch of self-reported subjective symptoms with no biomarkers or any established physiological mechanism, I believe the null hypothesis would be psychological. (This is why, for instance, the symptoms of grief would be considered a psychological condition absent evidence to the contrary.) You might have specific arguments and evidence for having a different prior in this specific case, in which case I would like to hear them. > What makes it a red flag that people want recognition for a condition? People stand to gain socially and economically from having their symptoms classified as a physiological disease, so they are less likely to approach the evidence dispassionately. When much of the discussion online is provided by such advocacy group, we ought naturally be suspicious.
- austinjp 8y ago
  The choice isn't binary physical or psychological. No biomarkers? How about: currently unknown biomarkers. And why the preoccupation with biomarkers anyway? What are the biomarkers for phantom limb pain or PTSD? A suggestion: spend a few months working with, listening to, and helping people before publicly declaring that you've got the measure of their problems.
- mstroeck 8y ago
  The issue here is that you did some "brief googling" (your words) on a complicated, confusing, cutting-edge area of clinical research, and now feel competent to state your completely uninformed "null-hypothesis"... Here's some basic information: https://www.cdc.gov/me-cfs/index.html https://www.cdc.gov/me-cfs/index.html https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research https://www.nih.gov/news-events/news-releases/nih-announces-... http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS/MECFS.aspx http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS/MEC...
  - jessriedel 8y ago
    I've seen those links. Is there some particular evidence you're pointing to? Or a position statement by experts concerning a convincing physiological mechanism?
    - mindgonehaywire 8y ago
      You've seen those links? Have you read them? The third one is a link to the most extensive literature review ever undertaken, and their conclusions were strong enough for them to state flatly in the abstract that this is not psychological or psychiatric. https://www.ncbi.nlm.nih.gov/pubmed/25695122 https://www.ncbi.nlm.nih.gov/pubmed/25695122 I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness. What evidence exactly is required? The volume of studies indicating objectively measurable biological abnormalities is massive. Many are unreplicated due to longstanding funding issues. But while I think most reasonable people would agree that psych issues and/or stress are capable of causing a number of physical issues, I can't imagine we'll ever see anything that suggests that psych issues could possibly come close to affecting the body in the severe ways that Myalgic Encephalomyelitis does. https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o
      - jessriedel 8y ago
        > You've seen those links? Have you read them? The third one is a link to the most extensive literature review ever undertaken, I did read those links. The first two conspicuously did not make a claim about a physiological origin, and the third gave a "report" link that led to a paywall. https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomy... > and their conclusions were strong enough for them to state flatly in the abstract that this is not psychological or psychiatric. https://www.ncbi.nlm.nih.gov/pubmed/25695122 https://www.ncbi.nlm.nih.gov/pubmed/25695122 Thanks! This new link was super useful, and is probably the strongest evidence available on this thread. Do you think that the CDC would endorse the claim about physiological origins in this report? (It's from 2015.) It's notable that the report introduces yet another name and set of defining criteria. As far as I can tell this report does not yet reflect an expert consensus, but I've updated my opinions significantly. > I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness. Can we agree that, given the social and economic implications, there is a huge demand from patients for doctors to issue a diagnosis for various collections of self-report symptoms (not just CFS/ME/SEID)? And that this leads to the potential for bias in the system? Are you not unsettled by the fact that the report you link admits that replication and validity are still big open problems? I'm generally very worried with the anger and political bent to this thread (though your comments in particular have been very productive and are much appreciated). It just seems more productive try to convince skeptics based on the merits of the evidence, and admit when there remain significant disagreement and uncertainty among experts.

jessriedel 8y ago

> Until you have evidence that it is purely psychological I would refrain from suggesting such. If there are a bunch of self-reported subjective symptoms with no biomarkers or any established physiological mechanism, I believe the null hypothesis would be psychological. (This is why, for instance, the symptoms of grief would be considered a psychological condition absent evidence to the contrary.) You might have specific arguments and evidence for having a different prior in this specific case, in which case I would like to hear them. > What makes it a red flag that people want recognition for a condition? People stand to gain socially and economically from having their symptoms classified as a physiological disease, so they are less likely to approach the evidence dispassionately. When much of the discussion online is provided by such advocacy group, we ought naturally be suspicious.

austinjp 8y ago
The choice isn't binary physical or psychological. No biomarkers? How about: currently unknown biomarkers. And why the preoccupation with biomarkers anyway? What are the biomarkers for phantom limb pain or PTSD? A suggestion: spend a few months working with, listening to, and helping people before publicly declaring that you've got the measure of their problems.
mstroeck 8y ago
The issue here is that you did some "brief googling" (your words) on a complicated, confusing, cutting-edge area of clinical research, and now feel competent to state your completely uninformed "null-hypothesis"... Here's some basic information: https://www.cdc.gov/me-cfs/index.html https://www.cdc.gov/me-cfs/index.html https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research https://www.nih.gov/news-events/news-releases/nih-announces-... http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS/MECFS.aspx http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS/MEC...
- jessriedel 8y ago
  I've seen those links. Is there some particular evidence you're pointing to? Or a position statement by experts concerning a convincing physiological mechanism?
  - mindgonehaywire 8y ago
    You've seen those links? Have you read them? The third one is a link to the most extensive literature review ever undertaken, and their conclusions were strong enough for them to state flatly in the abstract that this is not psychological or psychiatric. https://www.ncbi.nlm.nih.gov/pubmed/25695122 https://www.ncbi.nlm.nih.gov/pubmed/25695122 I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness. What evidence exactly is required? The volume of studies indicating objectively measurable biological abnormalities is massive. Many are unreplicated due to longstanding funding issues. But while I think most reasonable people would agree that psych issues and/or stress are capable of causing a number of physical issues, I can't imagine we'll ever see anything that suggests that psych issues could possibly come close to affecting the body in the severe ways that Myalgic Encephalomyelitis does. https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o
    - jessriedel 8y ago
      > You've seen those links? Have you read them? The third one is a link to the most extensive literature review ever undertaken, I did read those links. The first two conspicuously did not make a claim about a physiological origin, and the third gave a "report" link that led to a paywall. https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomy... > and their conclusions were strong enough for them to state flatly in the abstract that this is not psychological or psychiatric. https://www.ncbi.nlm.nih.gov/pubmed/25695122 https://www.ncbi.nlm.nih.gov/pubmed/25695122 Thanks! This new link was super useful, and is probably the strongest evidence available on this thread. Do you think that the CDC would endorse the claim about physiological origins in this report? (It's from 2015.) It's notable that the report introduces yet another name and set of defining criteria. As far as I can tell this report does not yet reflect an expert consensus, but I've updated my opinions significantly. > I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness. Can we agree that, given the social and economic implications, there is a huge demand from patients for doctors to issue a diagnosis for various collections of self-report symptoms (not just CFS/ME/SEID)? And that this leads to the potential for bias in the system? Are you not unsettled by the fact that the report you link admits that replication and validity are still big open problems? I'm generally very worried with the anger and political bent to this thread (though your comments in particular have been very productive and are much appreciated). It just seems more productive try to convince skeptics based on the merits of the evidence, and admit when there remain significant disagreement and uncertainty among experts.