Overarching approaches to managing ME/CFS

  • @crashdummy that sounds great and really organized - my situation with doctors is a bit of a mess, and I can see how having a special clinic as a centralized management point would be really helpful.

    I have kept a detailed medical log book for nearly 2 years. It's helpful for me, but nobody else seems to care about it - the one exception is when I was participating in some research and the researchers asked me what meds I'd taken in the last fortnight, I was able to tell them straight away and they thought that was pretty neat. (I imagine most medical professionals don't have the time - or patience - to review 800 days worth of symptoms, meals, medications and vitals!)

  • @river I hear you there. Finding that someone who can help with a holistic approach and actually cares is the utopia. As Paul mentioned, attending a specialist in a certain field will deliver an outcome for that field only. Some specialists work together but always behind the scenes and we never really know what's going on overall. Your 2 year medical log is fantastic. I would assume it has identified areas of concern, progression, regression etc... Summary of these statistics and overall result, say on a quarterly basis, can help reduce the data. If you needed more heart medical, then when you see the specialist, that history is gold to them. πŸ€“

  • I was lucky that, like @crashdummy, I was able to see a CFS "specialist" at a CFS focused clinic. They were GPs with enough alternative to focus on the actual issues (we're talking ~2000), but not too much as to be zany.

    That was around 10 years into my CFS journey, and it was life changing. Before then I'd seen too many clinicians who told me it was all in my head or similar. Having someone with knowledge, even just respect of the overall condition and all the manifold symptoms, was so significant that even now, thinking back, I am a bit overwhelmed.

    Life for me moved on from the clinic. But 20 years on from first seeing the CFS specialist, I take the strength of the overarching management that deals with individual symptoms with me in my approach. In these more enlightened times, I've found a plain old regular GP who is good, and helps me in my pursuits down specialist lines.

  • @PaulB What I would give for a GP out here, who I can say is my regular doctor. Yes, I agree with you about the times being more enlightened than 20 years ago. If I had a GP I could access more readily and was well versed in the illness, I could relax more with the medical file management, which would make living with this a lot easier. What's interesting is the CFS focused clinic you attended was life changing. This has been my experience as well. πŸ€“

  • @river and @crashdummy, you guys are impressive with your tracking and chronicling.

    Whilst I don't keep a diary, I have set up some Google Slides for myself which name and describe all the various symptoms I have and have had.

    The slides include only enough info to capture the essence of the symptom. And definitely a picture to make them look appealing. On the first page after the title page is a simple list of current supplements/meds I'm taking.

    Immediately after that I've got an executive summary of the top 5 symptoms, ranked in order, that I'm experiencing broadly in the current half year or so.

    This has been sooooooo good for me to reflect on how I've described things - can I improve my description of them? Can I improve my literacy around what the symptom is, what it feels like? Can I improve my sense of causation, or consequence?

    Any time I look at the slides (might be weeks or months apart) I will prod and probe, fine tune, edit.

    When I visit health care professionals, and it's appropriate, I'll open up the Google Slides on my phone and use them to frame and focus my conversations.

    Here is the page for what was my #1 symptom in the last year or so (evolving now, will probably drop down, happily due to good management of it):
    Screen Shot 2021-02-15 at 8.47.39 pm.png

  • @PaulB You're a marvel. Love the slide format ... so simple in conveying the messages ... πŸ€“

  • @crashdummy I love the idea of a quarterly summary. I wish I'd thought of breaking it down that way when I started manually entering all my data into spreadsheets! I got to the one year mark then gave up. That said, I gained a lot of insight from a years worth of data in a spreadsheet. It would be interesting to have it broken down by month so I could see the progression of symptoms over time but unfortunately I didn't do it that way... Ah well, lessons learnt for next time.

  • @river If you are using spreadsheets, can they be set up to display the data in a graph or pie chart. I used spreadsheets (antique version software) You would have to set the formula /sum to reflect the type of data analysis you want. Mind boggling for me ... I still struggle using technology and understanding it.πŸ€“

  • @crashdummy yep, that's what I do πŸ™‚ but my notes are originally handwritten because I just prefer that day to day... So I have to transcribe them all onto the computer which is super time consuming 😩

  • @PaulB Hi Paul...quick question...you made reference to a CFS focused clinic with a "specialist"....do these exist now? Struggling to find someone who "specialises"!! Thanks, Carolyn

  • @Carolyn26 said in Overarching approaches to managing ME/CFS:

    @PaulB Hi Paul...quick question...you made reference to a CFS focused clinic with a "specialist"....do these exist now? Struggling to find someone who "specialises"!! Thanks, Carolyn

    Hi Carolyn,

    they do exist. The one I visited was a group of GPs and allied health professionals several of who specialised in CFS. Back in the late 90s early 00s this was combined with an alternate flavour - but I am immensely grateful that they focused on CFS, and if there was some acupuncture too, fine πŸ˜‰

    I went to one in a major city in Australia - we're not allowed to post names here - but anyone can message me if they like.
    I was very lucky - even back around 2000 there was a 2 year wait to get on the books. But you never know your luck.

    All the best!

  • Hi Paul...thanks for getting back to me so quickly! I'm very grateful for the info and will look into it. Best part is they are in Sydney...i'm in the Southern Highlands so do-able (on a good day!!). Thanks again, take care

  • This post is deleted!

  • Note from Admin to say.. no-one has done anything wrong (for definite!) but we've realised we missed something off the community guidance about discussing specific clinics as that is a kind of identifying information about individuals (although admittedly one step removed).

    While we review the guidance on this can we ask that we don't have any more comments. The logic is that positivity is good.. but if we have public posts with positivity about some clinics other clinics could say we're promoting some and not others.. and it's quite tempting for other people to chip in and share negative experiences.. and then we have a situation 😧

    It's totally fine to discuss experiences with each other in the chat functionality so it could be that you would say, 'I had a good experience in a clinic in Sydney and would be happy to share details with you in a private message'.. or it could be that we put any clinic discussion in the closed part of the forum. Probably the former though. Also very open to your thoughts as a community on how to manage this! Thanks!

  • @EmergeAustralia I think there also needs to be specific rules about naming doctors/health professionals, not just clinics.

  • Thanks @river I think that's already on the guidance in terms of not identifying individuals but I agree that the whole section needs to be clearer. We'll get onto it. πŸ™‚

  • @EmergeAustralia Good point. I have to admit I hadn't considered naming clinics as being seen as promotion or too close to individual identification but definitely can see your point, thanks for letting us know. I guess my only concern with private messaging is that so many of us struggle to find doctors with sympathy or understanding of this condition that being able to let others know (particularly those new to this) of any good experiences could be very beneficial on a community level (whereas private messaging only provides information to the individual). I guess in that sense I'd be inclined to want to ask for this to be permitted in the closed part of the forum but I can understand why this too might be an issue. I don't necessarily have a good solution, sorry, I just wanted to let you know my thoughts. In the end happy to go with whatever the final recommendation and guidelines are πŸ™‚

  • Totally happy to answer that @Katt! The issue with sharing places where you've had a positive experience is that it is such an individual - and subjective - thing.

    For many years Emerge Australia did specifically ask the community to share their thoughts and then offered those perspectives to others (with a disclaimer).

    One example of a negative outcome is where a doctor had no actual expertise at all - they were just kind and sympathetic. A patient had shared because - from their perspective - if someone else is in XX location it might be worth telling them that XX doctor is super sympathetic and friendly. However, what actually happened is, because this was a public document, other people had driven hundreds of miles and ended up as a new patient with a doctor who they thought was 'recommended as a good doctor for ME/CFS patients' and were then totally disappointed. The doctor was unhappy, the patient was harmed because they drove for miles and everyone was mis-served.

    We also often had complaints about doctors on the list so, for every three patients who had a great experience, there might be one - or five - negative experiences. And, if you feel that you or a loved one has been harmed by a doctor you will - quite reasonably - feel that it's a public service or moral requirement to protect other people from that happening to them.

    It very quickly gets very very complicated. Much easier for us to encourage one on one conversations where people can talk, discuss and judge for themselves whether it sounds like a fit for them. This is the main 'gold' from this forum I think. You can, with a fair degree of anonymity, have a chat with someone and then make your own mind up. As soon as we get into 'I read that so and so is great on the Emerge Australia forum' we're really into that territory of did 'we' recommend them or not? Phew. Apologies for long explanation!

  • @EmergeAustralia ok, I can see what you are saying now. Thanks for taking the time to explain, I really appreciate it! I guess I can agree in that case that chat is likely the better option. Thanks again.

  • I saw a professor of immunology/allergist last week and he is the closest to a specialist for ME/CFS that I have come across. I have a GP that has a special interest in ME/CFS but is not a β€œspecialist β€œ. The Professor has prescribed low dose naltrexone (NDS) so I will see how that goes. Wondering if anyone has tried or has knowledge of this? I googled .....

Log in to reply