Emerge Australia Health and Welfare Survey results

Emerge Australia conducted a health and welfare survey of 600 Australians with ME/CFS, and has released a 77 page report of the findings. The survey covers a range of topics, including time to diagnosis, key symptoms experienced, treatments which were useful.

Link to report: https://emerge.org.au/emerge-australia-health-and-wellbeing-survey-2018/#.W7AUGRp_WhB

Infographic with summarised results below.

 

https://twitter.com/user/status/1050761571805396993

https://twitter.com/user/status/1050768590444683264

 

https://twitter.com/user/status/1050794810548850688

 

https://twitter.com/user/status/1050805462290042880

 

https://twitter.com/user/status/1050820162058899466

 

It is an interesting study, with a good number of respondants (600+). The limitation is that it is a self-report study and that some of the answers are applicable only to Australia with its unique health care system,social service structure, vast geography, acceptance of the illness, and such. Access to care varies widely in normal times depending on whether one lives in a large urban area or in a remote village, and ME is not a ‘normal thing’ in the health care system (at least where I live).

One of the question I cringed most pertained to what disease patients were diagnosed with. The answers varied between ME, CFS, Me/cfs or SEID. I note in another part of the study that a number of patients self-diagnosed. The answer to that particular question tells absolutely nothing, does not inform on the actual illness each patient may have.

See, it could be interpreted in many different ways. The least educated patient (or those who feel it’s all the same, and they got a point)- will answer whatever- some could even answer chronic fatigue. And I do not believe there is a way to differenciate what illness each participant has.
The other way to see it is what does the physician know about the minute differences betweeen the nomenclature, and how many drs in Australia (or anywhere in the world) would know the differences in nomenclatures and definitions? GP’s are not likely to know. Specialists, well, i cannot name a single specialist physician in Australia. What do they know and do they have a case definition of each on a cheat sheet in their office as they see patients? My best guess is no.

Since we have no biomarker, and patients have a laundry list of symptoms, it would be very easy to miss the intricacies of each definition. It means that a SEID patients may well have ME and a CFS patients may well have SEID but then move on to have a different disease in 3 years time.

Does it really matter to ask the patients what case definition they have been given on diagnosis? Because my GP said I have chronic fatigue. I would rather say I have ME, since the CF word is cringe worthy. But i am just as sick as anybody else, EBV trigger, never got better, PEM and all. At this point, if you have been sick for over 2 years (but of course you can be diagnosed way earlier than that), cannot work, have PEM, then chances are you belong in the 17 millions pool of patients awaiting for science discoveries.

We simply do not have the expertise in Canada for physicians to make a precise dignosis, because we do not have biomarkers and because physicians give an opinion of what they feel the patient may have based on their own knowledge or exeprience or both.

So that question in my opinion is divisive and pointless.

 

https://twitter.com/user/status/1051296964606906368

Some of these people were getting disability payments. It might have been interesting to have also asked total incoming money to compare people's circumstances.

 

What do you mean by total incoming money? I assume the amounts given post illness are total including disability benefits

 

No, this is not the case.
That's why I posted the wording for the question:

Also later they say

 

https://twitter.com/user/status/1051536641385476096

 

https://twitter.com/user/status/1051538025770115074

 

https://twitter.com/user/status/1051594198904918018

 

But those are not treatments! At best, they are symptom management. Otherwise, they are self-management. If a typical physician read all this they will think we are all better by resting and pacing, and it is not the case.

 

https://twitter.com/user/status/1051888740623405062

 

https://twitter.com/user/status/1051925781386006528