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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Webinar on Chronic Pain Conditions & the Overlapping Conditions Alliance

Dolphin

Senior Member
Messages
17,567
You have to look around first. Ask questions, like, "hey, why do these conditions seem to show up together? I wonder if by investigating the connection we could find a clue as to what is going on."
I think this is a good point. As long as it's not just questionnaire research/research looking for psychopathology (of course).
 

Dolphin

Senior Member
Messages
17,567
Report on webinar?

Anyone hear anything they thought was interesting? I don't see myself have the time/energy to listen myself.

I forgot to say that one good thing about the webinars is that they are available long-term - the benefit isn't just at the time they were on, as they are recorded. Thanks to the CAA for those they've already put on.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
In general, there are a finite number of symptoms, that is why you have to look for the cardinal symptom in a disease.

A headache can have many causes and diagnosis is the art of discovering why the headache is happening. The psychosocial school have chosen to disregard this aspect of medicine and assume that having similar symptoms means people have the same disease - somatisation.

I think that patients can fall into the same trap (though less culpably). I remember years ago coming across a article about Candida. It had a list of general symptoms like tiredness, malaise and said if you had these and also had ever had antibiotics you probably had Candida overgrowth.

The cardinal symptom of ME/CFS is that exercise causes an exacerbation of symptoms and generalized malaise. The ill effects can be delayed up to four days and recovery is abnormally prolonged, even impossible.

By concentrating on the things that make us different from other illnesses instead of the things we share, like fatigue, research could take leaps and bounds. The sooner the likes of the CDC realise that the better.

Personally, I think my pain is not chronic the way it is in other illnesses, but is an active process caused by production of lactic acid. If we are going to be part of projects with other conditions that have significant pain, I hope that will be remembered.

Mithriel
 

Hope123

Senior Member
Messages
1,266
This was brought up earlier and I don't have the energy to backtrack but the point about illnesses being taken as something else initially but later recognized as the diverse manifestations of one illness is astute.

The conditions involved like FM, IBS, TMJ, interstitial cystitis, etc. are in and of themselves diagnoses of exclusion or are unclear diagnostic entities. (I especially am aware of this case in IBS as one of my former classmates specialized in IBS research.) For example, someone with lupus might have joint pains, rashes, seziures, kidney problems. If we didn't know about lupus, we could just as easily say that this person had several co-morbidities (making it up here but for example's sake, we could say this person has arthritis, rosacea, etc. as co-morbidities) when in fact the base illness is lupus and this explains all this person's symptoms.

Focusing on unique aspects of this illness, as Mithriel wrote above me, is extremely important.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
In general, there are a finite number of symptoms, that is why you have to look for the cardinal symptom in a disease.

A headache can have many causes and diagnosis is the art of discovering why the headache is happening. The psychosocial school have chosen to disregard this aspect of medicine and assume that having similar symptoms means people have the same disease - somatisation.

I think that patients can fall into the same trap (though less culpably). I remember years ago coming across a article about Candida. It had a list of general symptoms like tiredness, malaise and said if you had these and also had ever had antibiotics you probably had Candida overgrowth.

The cardinal symptom of ME/CFS is that exercise causes an exacerbation of symptoms and generalized malaise. The ill effects can be delayed up to four days and recovery is abnormally prolonged, even impossible.

By concentrating on the things that make us different from other illnesses instead of the things we share, like fatigue, research could take leaps and bounds. The sooner the likes of the CDC realise that the better.

Personally, I think my pain is not chronic the way it is in other illnesses, but is an active process caused by production of lactic acid. If we are going to be part of projects with other conditions that have significant pain, I hope that will be remembered.

Mithriel

I agree 100%.