Open The Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease)

I see a few backs-and-forth on Twitter with Jaime, they are debugging this live a bit. Not ideal but they are responding quickly so it will improve in the next few days and weeks. QA is expensive, always more than people expect.

 

So far that's what I've seen, same with the Body Politic research, you are pretty much describing what this project is doing (or trying to), as far as I can tell, so I think that's a good start. They don't just ask for lists of symptoms, they add many other details like severity, timeline, pretty much the obvious standard follow-ups.

I 100% agree that just asking a list of symptoms with no details isn't useful at all, but that's not what I'm seeing, each further research is about adding details guided by early and more open-ended questions. Which makes sense, starting out more general and digging deeper based on responses and with the fewest possible assumptions. Basically: following the evidence.

I have also never seen any such research before, whether by scientists of BPSers (well, other than Ramsay anyway). Studies only ever restrict themselves to a few pre-selected symptoms, if not just fatigue, and ask nothing beyond that. So that's why I see this as potentially useful, just a question of how execution goes.

 

I think there is something potentially useful but it will depend on how this data is inteprerpreted and analysed.

In our experience there are only some symptoms that seem to " count" medically.

It's only on forums like this that symptoms are discussed and you realise how many there are and that some are less common than others but still symptoms

Medicine seems to cut off after a handful to the extent that in paediatrics at least you are not listened to if its not on the standard tick box list. And that list is not very long, but a little bit longer than accouple of years ago if you have a consultant who is conversant with the common comorbidities.

If network analysis is used on data it could be interesting. But only if some of the glitches mentioned are addressed

 

Trial By Error: #MEAction’s Chronic Illness Survey; Patients’ Research Informs CDC’s Long-COVID Advice

https://www.virology.ws/2021/06/15/...ch-informs-cdcs-long-covid-advice/#more-16069

 

FWIW I once saw a rheumatologist who wanted to say I had "some degree of" EDS III rather than acknowledging my ME/CFS. (My thumbs bent back at the time). I did not know what that meant. Does it come in degrees? Do I "have" it or not? Is it vague as to whether I have it or not? He preferred EDS and POTS generally and so that was how he went about his practice. I got the sense this is how he dealt with young women coming in with these kinds of symptoms. He was generally very rude and told me patronizingly I should be going out and having a good time (I was in my 20s). He got angry when I wanted to discuss what the treatment plan might be. I did not go back.

I filled out this survey; I did not put down anything about an EDS diagnosis. Diagnoses often seem like something people like to give to justify whatever treatment they happen to use or want to put you on, it's often just down to their practice and what they usually do. Some rheumatologists prefer putting people down as "fibromyalgia" rather than ME/CFS and I have also had someone want to go down this route. (I don't have it; I don't have a pain presentation). Any survey results will also be dependent on patients making judgements about whether certain doctors' questionable diagnoses can simply be disregarded, for fear of creating statistical noise.

I am glad they are trying to do some sort of survey although I'm not sure of its usefulness - just hope they qualify whatever the results are appropriately.

 

That is tricky to me. There are clear cut diagnosis out there. Cancer would be one. You either have cancer, or you don’t. Appendicitis. Hepatitis. Bone fractures. Essentially everything that is diagnosed using a biomarker or is visible through imaging or under a microscope.

i agree with the example you give, fibromyalgia, and that it is frequent that patients do not receive the correct diagnosis when it comes to ME, FM and other, there is a clear knowledge gap in medicine.

 

Yes, I should have been more clear. I did not mean diagnoses as a whole. I meant that re: chronic illness patients, what diagnoses they get often end up going this way - just an artefact of the kind of practice the doctor runs that they go to. It is not good practice, but in my experience that seems to be what happens. Maybe it's just because so few doctors seem comfortable working with ME/CFS.