4 ms·

IBS is a illness that many people legitimately suffer, but also many hypochondriacs claim to have without evidence. The symptom profile of long covid is very c

IBS is a illness that many people legitimately suffer, but also many hypochondriacs claim to have without evidence. The symptom profile of long covid is very close to lyme disease, another disease people actually get but also many more people claim to have without evidence. I'd like to see the overlap between long covid sufferers, IBS, lyme disease, people with a gluten allergy, PCOS etc and the level of evidence that they actually have those diseases.

Bjartr 3y ago
> also many more people claim to have without evidence I've long been curious what the ratio is in various situations like this. It seems the lynchpin for any argument for withholding support. I've only ever seen the equivalent of "well obviously" on both sides and never any data
- ljf 3y ago
  When my wife first had ongoing symptoms after covid (before it had a snappy name), it was interesting how many people wanted to think that somehow she was making it up - and that being trapped in bed/on the sofa while I was out having fun with the kids was some sort of 'affectation'. As people understood what long covid was and does, people generally came around to the idea, but still (mainly online) people have this opinion that 'people must be making it up' - despite SARs being known to cause similar long term issues for some of those infected, and some people having long term impacts from Spanish Flu 100 years ago.
deckiedan 3y ago
Maybe part of the problem is that IBS(-like) symptoms, and many "fuzzy" / hard-to-diagnose ones (fatigue, etc) are also caused or exacerbated by anxiety and frustration and emotional distress. So if I'm not hyperchondriac, but am frustrated and stressed by (x) random symptom or covid related (y), or being off sick w/ "normal" Covid & struggling to regain energy, then if I'm emotionally distressed by it, then may develop IBS and fatigue symptoms on top of that - which then feeds into the loop... (Said as someone for the last several months currently struggling with a whole bunch of symptoms and not managing to get any helpful diagnosis or area I can work on to improve things...)
- deleted 3y ago
  [deleted]
Atsuii 3y ago
PCOS is a strange one for you to throw in there considering it has a physical manifestation that can be very reliably tested for via an ultrasound. The others are things that are quite often diagnosed via process of elimination and don’t have definitive tests.
- willcipriano 3y ago
  People get negative ultrasounds and claim doctors just hate them or refuse to help them. I think a part of this is online communities spring up around these diseases and a doctor telling you that you don't have it is basically them telling you they don't get to hang out with your friends anymore. Better data exists for IBS on this line of thinking: > The Illness Attitudes Scales (IAS) and the Beck Depression Inventory (BDI) were administered to 40 patients with irritable bowel syndrome (IBS) and these were compared with 35 patients with organic gastrointestinal (GI) disease, 37 depressed patients, and 40 healthy volunteers. > All the patient groups had abnormal IAS scores compared with the healthy group, but these were most marked among the IBS patients with elevated scores on six out of the eight subscales. Three of these were specific to the IBS patients: bodily preoccupation, hypochondriacal beliefs and disease phobia. https://pubmed.ncbi.nlm.nih.gov/7595881/ https://pubmed.ncbi.nlm.nih.gov/7595881/
  - reedf1 3y ago
    What do you suggest is done then? Given some people experience legitimate IBS, what quantity of false negatives (i.e. legitimate sufferers who are ignored by the medical system) are you willing to tolerate? Also - given medical developments in gut health on GABA, the gut-brain link is not so crazy. So your study could be a reverse causation.
    - willcipriano 3y ago
      > What do you suggest is done then? After no physical ailments are detected, they should be treated by psychologists rather than physicians.
reedf1 3y ago
IBS is a syndrome (a grouping of symptoms), not a disease. It, by definition, has no clear cause or treatment. Also - it is pretty easy to prove you are experiencing these symptoms. The body is a pretty complex thing, it can be difficult to determine the underlying cause of a symptom even if we do have an underlying understanding of what the body is doing (and sometimes we don't!).
bigfryo 3y ago
Lol... Very tactfully worded post there .. Kudos to you for that.. I certainly could not be that tactful
vjk800 3y ago
"...another disease people actually get but also many more people claim to have without evidence." Lyme disease can actually be detected. For IBS and long covid, you are making the "no true Scotsman" argument. Diagnosing those is basically filling a questionnaire asking in so many ways "do you feel like you have it?" The same is true for many mental illnesses, by the way. Not to discount people's experience of having these problems - they definitely are real - but since the "official" diagnose is very close to just people telling the doctor that they feel like they have it, self diagnosing is not as bad as you make it sound.
Zee38484 3y ago
> hypochondriacs claim to have without evidence. > people claim to have without evidence. Bit of a technical note. Patients claim is the evidence on its own. Patient may be undiagnosed, but there is an evidence for such claim. IBS, lyme disease, all sorts of allergies are very hard (and expensive) to diagnose. Some people have no money for doctors, and may not be even registered with GP. If customer at restaurant says they have a peanut allergy, you better to believe them. Saying "there is no evidence for such claim" may get you in troubles very fast...
jinder 3y ago
Or perhaps there are significant links demonstrated in murine models of the multi-directional relationship of the gut-brain-immune axis, and that traditional models of disease are not sufficient to elucidate this?
CipherThrowaway 3y ago
I don't understand the mindset behind a comment like this. Where does the confidence behind this opinion come from, when the knowledge basis falls below "bothered to Google it"? The idea of a hypochondriac making a spurious claim to IBS is pretty ludicrous. You know if you have the symptoms or not, and IBS is probably the best possible outcome for someone with chronic bowel symptoms. Lumping PCOS in with gluten allergy is giving "shit men believe about women's health." Maybe try listening to some women before forming opinions on their reproductive health.

Bjartr 3y ago

> also many more people claim to have without evidence I've long been curious what the ratio is in various situations like this. It seems the lynchpin for any argument for withholding support. I've only ever seen the equivalent of "well obviously" on both sides and never any data

ljf 3y ago
When my wife first had ongoing symptoms after covid (before it had a snappy name), it was interesting how many people wanted to think that somehow she was making it up - and that being trapped in bed/on the sofa while I was out having fun with the kids was some sort of 'affectation'. As people understood what long covid was and does, people generally came around to the idea, but still (mainly online) people have this opinion that 'people must be making it up' - despite SARs being known to cause similar long term issues for some of those infected, and some people having long term impacts from Spanish Flu 100 years ago.

deckiedan 3y ago

Maybe part of the problem is that IBS(-like) symptoms, and many "fuzzy" / hard-to-diagnose ones (fatigue, etc) are also caused or exacerbated by anxiety and frustration and emotional distress. So if I'm not hyperchondriac, but am frustrated and stressed by (x) random symptom or covid related (y), or being off sick w/ "normal" Covid & struggling to regain energy, then if I'm emotionally distressed by it, then may develop IBS and fatigue symptoms on top of that - which then feeds into the loop... (Said as someone for the last several months currently struggling with a whole bunch of symptoms and not managing to get any helpful diagnosis or area I can work on to improve things...)

deleted 3y ago
[deleted]

Atsuii 3y ago

PCOS is a strange one for you to throw in there considering it has a physical manifestation that can be very reliably tested for via an ultrasound. The others are things that are quite often diagnosed via process of elimination and don’t have definitive tests.

willcipriano 3y ago
People get negative ultrasounds and claim doctors just hate them or refuse to help them. I think a part of this is online communities spring up around these diseases and a doctor telling you that you don't have it is basically them telling you they don't get to hang out with your friends anymore. Better data exists for IBS on this line of thinking: > The Illness Attitudes Scales (IAS) and the Beck Depression Inventory (BDI) were administered to 40 patients with irritable bowel syndrome (IBS) and these were compared with 35 patients with organic gastrointestinal (GI) disease, 37 depressed patients, and 40 healthy volunteers. > All the patient groups had abnormal IAS scores compared with the healthy group, but these were most marked among the IBS patients with elevated scores on six out of the eight subscales. Three of these were specific to the IBS patients: bodily preoccupation, hypochondriacal beliefs and disease phobia. https://pubmed.ncbi.nlm.nih.gov/7595881/ https://pubmed.ncbi.nlm.nih.gov/7595881/
- reedf1 3y ago
  What do you suggest is done then? Given some people experience legitimate IBS, what quantity of false negatives (i.e. legitimate sufferers who are ignored by the medical system) are you willing to tolerate? Also - given medical developments in gut health on GABA, the gut-brain link is not so crazy. So your study could be a reverse causation.
  - willcipriano 3y ago
    > What do you suggest is done then? After no physical ailments are detected, they should be treated by psychologists rather than physicians.

reedf1 3y ago

IBS is a syndrome (a grouping of symptoms), not a disease. It, by definition, has no clear cause or treatment. Also - it is pretty easy to prove you are experiencing these symptoms. The body is a pretty complex thing, it can be difficult to determine the underlying cause of a symptom even if we do have an underlying understanding of what the body is doing (and sometimes we don't!).

bigfryo 3y ago

Lol... Very tactfully worded post there .. Kudos to you for that.. I certainly could not be that tactful

vjk800 3y ago

"...another disease people actually get but also many more people claim to have without evidence." Lyme disease can actually be detected. For IBS and long covid, you are making the "no true Scotsman" argument. Diagnosing those is basically filling a questionnaire asking in so many ways "do you feel like you have it?" The same is true for many mental illnesses, by the way. Not to discount people's experience of having these problems - they definitely are real - but since the "official" diagnose is very close to just people telling the doctor that they feel like they have it, self diagnosing is not as bad as you make it sound.

Zee38484 3y ago

> hypochondriacs claim to have without evidence. > people claim to have without evidence. Bit of a technical note. Patients claim is the evidence on its own. Patient may be undiagnosed, but there is an evidence for such claim. IBS, lyme disease, all sorts of allergies are very hard (and expensive) to diagnose. Some people have no money for doctors, and may not be even registered with GP. If customer at restaurant says they have a peanut allergy, you better to believe them. Saying "there is no evidence for such claim" may get you in troubles very fast...

jinder 3y ago

Or perhaps there are significant links demonstrated in murine models of the multi-directional relationship of the gut-brain-immune axis, and that traditional models of disease are not sufficient to elucidate this?

CipherThrowaway 3y ago

I don't understand the mindset behind a comment like this. Where does the confidence behind this opinion come from, when the knowledge basis falls below "bothered to Google it"? The idea of a hypochondriac making a spurious claim to IBS is pretty ludicrous. You know if you have the symptoms or not, and IBS is probably the best possible outcome for someone with chronic bowel symptoms. Lumping PCOS in with gluten allergy is giving "shit men believe about women's health." Maybe try listening to some women before forming opinions on their reproductive health.