Overarching approaches to managing ME/CFS

  • What overarching approaches to managing ME/CFS work - or don't work - for you?

    The condition is made up of lots of different symptoms. Is there a unifying theme for how you deal with all of them?

    How do you interact with medical professionals? What has worked there?

    Have you engaged the NDIS? Broadly, what was and is that process like?

    #management #strategies #approaches

  • Oooh, big questions.

    The condition is made up of lots of different symptoms. Is there a unifying theme for how you deal with all of them?

    Understanding the physiology of my symptoms is the way I approach everything. In the case of fatigue, learning about the aerobic energy system was helpful. For other symptoms, understanding the cyclic production of various hormones/neurotransmitters and the roles those hormones play in the nervous system and immune system has been helpful for me. If I have a new symptom pattern, I search PubMed for any research that might have been done on it. Knowing what's going on in my body means I can better predict what my symptoms will be at various times and that is somewhat reassuring. It also informs what treatments I'm willing to try, and which ones I'll stay far away from.

    On the flip side, if I've identified a pattern in my symptoms but no scientific evidence supports it, I'm still going to believe my individual experience over the (lack of) evidence. This is very important.

    How do you interact with medical professionals? What has worked there?

    First off I've found that it's important to know what you want to get out of an appointment before you go in. And if you're not sure why you're there, say so.

    I've learnt that doctors typically want to get things done as quickly and efficiently as possible. It's a tricky balancing act to make sure they have all the info they need to accurately treat and diagnose you, without spending your entire appointment explaining one small detail! This is a particular challenge with GPs who have only a fraction of the time allotted to specialists for each patient.

    With my GP, what I've found works is to have a concise todo list and I give her a copy of it at the start of the appointment. I make sure to word it clearly, order the items by priority and highlight the key words in each item so it's easy to skim read. We can get a lot done in just 10-15 mins this way.

    With specialists, what I've found doesn't work is writing out my medical history and giving it to them. This is the best way for me to communicate (maybe due to ASD), but specialists are apparently required to get a verbal history. So I'm still working that one out. If I try to give a medical history on the spot it will come out a mess! I need a script.

    Have you engaged the NDIS? Broadly, what was and is that process like?

    Not yet but I'm trying to. I'll get back to you on this once I know what it's like.

  • @river Really impressive, all of that.

    -- before I get into the following, the usual disclaimer. These are my opinions only. You should seek medical advice for your situation. etc.

    if I've identified a pattern in my symptoms but no scientific evidence supports it, I'm still going to believe my individual experience over the (lack of) evidence. This is very important.

    I agree so strongly with your message here.
    For mine, personal observations can be scientific. If they don't fit into one or other current professional scientific narrative - very important to give weight to those personal observations.

    A quick note on expectations going to doctors.
    One expectation can be that if you go to, let's say, to a skin specialist, they are going to look through the prism of their speciality.

    An example - I was trying to explore brain fog and similar issues, and sought out diagnostics from a university. How long does it take me to do different mental challenges?

    Doing a variety of tests was fascinating to me, and confirmed for me a few things just by doing them.

    Unfortunately the head researcher associated with the unit I got the testing at had a research focus on concussion. Basically all I heard officially was that he thought that my cognitive challenges were concussion related. Yaaaaaaaagh. No.

    Me and the thousands of other CFS sufferers have something other than concussion related issues.

    I like this cartoon for capturing this idea.

    I will finish by again confirming that medical professionals are very important in managing ME/CFS. Seek out good ones, and work with them.

  • @PaulB Great topic here . One thing I have found that works for me is to maintain good accounts of my symptoms in a documented format. These are added to my medical files. I always request copies of results, reports and notes. This file remains with me and can be accessed at anytime; crucial when GP's are a revolving door in the Rural areas. I have found that relying on a GP to manage the overall co-ordination of my medical doesn't work. I am fortunate in being a patient at a specialist Chronic Fatigue Clinic in Melbourne. They usually see me yearly or I can request a consult at anytime. I believe the judgements and overall analysis of my health status with ME/CFS is best managed this way. I go about my year attending appointments and if/or when important events occur, I can speak with a specific dedicated specialist/doctor who can review me and we go from there. If I have had crucial tests throughout the year(for example any hospitalisations etc), I always request the results to be forwarded to the Clinic. Anyone living with chronic illness/disease, really needs help in managing the medical roadmap and an assigned someone, to case manage it. Maybe I am being too optimistic in that wish. For those lost in this medical world whilst dealing with ME/CFS my advise is to simply begin with a daily journal. It is helpful in managing symptoms and can provide extra information for your medical file. Maybe someone could design one specific for 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.

  • 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.

  • @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 ...

  • @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.

  • @crashdummy yep, that's what I do 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

    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.

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