Kalinda...



  • Hi all, after years on the diagnostic merry go round, test after test, I have had more holes put in me than there were in the Trump electoral campaign. I feel I am deteriorating and would once and for all like medical confirmation. I ask kindly those of you here that have received one, who was it by, what was their professional status ?. Thanks in advance...



  • Just a quick note from admin - really good questions but we discourage naming individuals or specific practices (because people can quite quickly start to share opinions and then things can get negative or conversely seem like Emerge Australia has given an endorsement). You can of course share info privately. @Kalinda maybe if you can see where you are or how far you could travel people could message you with suggestions?

    Sharing of specialties that have done good diagnoses is also fine!



  • Professional status was my question , not name or contact details...



  • All good. It was more to just gently remind people who will reply. Your question is great 😊


  • Community Moderator

    Mine was by a GP (fairly early on as well - probably a bit too early on really, in that they could well have tested further, although in hindsight it didn't make a difference). There are some diagnostic guidelines on Emerge's main site, as well as a GP education module that could potentially be useful in terms of pointing GP's towards resources that may help them make a diagnosis. Best of luck with everything Kalinda.



  • I was diagnosed by a general physician (very different to a GP). I got referred by telling my GP I thought I had ME/CFS (which they agreed with) and asking for a referral to someone who could diagnose it. I got pretty lucky that the GP believed me, and knew someone to send me to. These days knowing what I know now, I wouldn't take that risk and I would find a suitable specialist through support groups first, then ask for a referral to that person.



  • My diagnosis which was now almost 19 years ago was by an integrative GP. He wasn’t considered very mainstream at the time. A lot depends on where you live in terms of what kind of professional you can access. Sounds like you’ve gone through quite challenging time getting diagnosed. Hope this forum is helpful.



  • Hi, pleased to meet you Kalinda!



  • What should be an easy question, isn't. According to the RACP Guidelines for CFS, a GP is suitable to diagnose. Taking a copy of either the International Consensus Criteria (ICC) or Canadian Consensus Criteria (CCC) to your GP might be a good starting point. Unfortunately, ME/CFS is a bit homeless when it comes to specialists...we don't belong to any one specialty and it's really a matter of finding someone who is knowledgeable and sympathetic. I think Rheumatologists and Immunologists are the most common that may be willing to diagnose.

    I hope you can find someone to help. A diagnosis can be useful for many reasons, even if there's not much that can be offered in the way of treatments.



  • @Kalinda Hello, nice to meet you🤓



  • Further to @Coggles77 comment I would like to add that the specialty best suited to diagnosing you will depend on what your most troublesome symptom(s) are. If you have a lot of muscle pain - rheumatologist. Flu like, respiratory or allergic symptoms - immunologist. Syncope and autonomic symptoms - cardiologist. And so on. But each of these specialties will first try to diagnose you with whatever it is they specialise in, not ME/CFS. Which could be helpful or harmful, depending. Obviously you want to rule out treatable causes but at the same time, most people with ME/CFS meet the criteria for at least on of fibromyalgia, MCAS, POTS, etc. That doesn't mean you have that disease instead of ME/CFS but rather that there's an underlying cause of the whole lot that scientists haven't identified yet.


Log in to reply