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Anyone been to the Griffith CFS/ME Clinic?

Discussion in 'General ME/CFS Discussion' started by lift, Jun 28, 2015.

  1. lift

    lift

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    Surely with a 6 month waiting list to get an appointment, someone from this forum has been there.

    My GP faxed them a referral but I havent heard from them. They used to only take appointments via email. Now they dont answer emails and you have to call on a certain day.
     
    Hutan likes this.
  2. LivingwithFibro

    LivingwithFibro Lily

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    Where is this clinic?
     
  3. alex3619

    alex3619 Senior Member

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    The Gold Coast, Queensland, Australia. Griffith is the name of the University it is attached to. I have not been to the clinic, though I once visited the university.

    I am of course presuming this means the clinic associated with NCNED.
     
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  4. Snow Leopard

    Snow Leopard Hibernating

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  5. minkeygirl

    minkeygirl But I Look So Good.

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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Only know that the university is next to the hospital 0n the gold coast.
     
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  7. Lynne B

    Lynne B Senior Member

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    Hi, everyone, we've been (my husband and I) just last month, after a 6 month wait.

    Comprehensive questionnaire to fill in first before you go. Lovely, sympathetic, knowledgeable people but they really don't study patients in depth during the visit. Simply confirmed I have the disease based on a few simple tests and more questioning there.

    They didn't confirm my husband has SEID but he hasn't previously been tested and doesn't always remember his symptoms, so I don't think their diagnosis of just chronic fatigue was correct for him. I'm glad we went, but don't think it helps for much except for confidence.

    Best to follow their research for the moment, which I think is pretty good, unless you happen to be under 65, from memory, when you might get into a study. But you really need to live nearby for that to be worth your while.
     
  8. Hutan

    Hutan Senior Member

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    Thanks @Lynne B. I have been wondering how useful their clinic is.

    I did contact NCNED about being involved in research; they mentioned that they have plans for studies in areas other than the Gold Coast for later this year.

    What was the name of the disease they confirmed you have? Did they say what criteria they are using to make the diagnosis? What simple tests did they do?

    So they didn't propose any treatments for you?
     
  9. Lynne B

    Lynne B Senior Member

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    sydney, australia
    Hutan, They said CFS but didn't get fussed about any name as far as I could see. They just did the most basic tests like measuring blood pressure on standing, etc., and then questioned me about my symptoms. I think they relied on my previous blood tests for the diagnosis of CFS and merely sought to confirm that my symptoms fell within the range they were expecting from their experience. Apparently their work still attracts sniggers from other disciplines. Don't have time to give you any more detail about my earlier blood tests at the moment that were done a few years ago from the Prince of Wales team. That team alerted me to my high blood pressure and recommended CBT, which was really good because the psychiatrist's tests were reassuring and also he recommended melatonin for sleep and referred me to a neurologist for small fibre neuropathy. Their physical exercise team were ineffective for me.

    Really, no one has come up with useful treatments apart from treatment for symptoms such as high blood pressure and small fibre neuropathy. But those treatments have really helped a lot.

    cheers,
     
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  10. redaxe

    redaxe Senior Member

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    I emailed them ages ago asking for some information about what their approach was. They couldn't give me much information just said it was likely to be immunological.
    So sounded to to me at the time (and from others here) that their approach for the moment is fairly conservative. Hence why I opted to go to the USA to see a CFS specialist instead. The sad reality for Australia is that it's 2015 and we still do not have a clinic or 1 doctor that actually employs or at least trials heavy immunological drugs so we are basically forced to travel the US for treatment and then to push this onto our GPs to follow up on. :bang-head:
    Lynne's comment above about it attracting 'sniggers' is disheartening too. You'd think medicine is a field that would attract people of of humility and grace not ego's and arrogance. Sadly we still have a long way to go.
     
  11. lift

    lift

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    I take it one benefit of getting diagnosed from the clinic is that it makes it more official. Which I assume would help you get disability support pension if you are applying for it. Every Dr I see seems to want to wash their hands of the diagnosis. Every time I ask for a medical certificate from a Dr they put up a big stink about it. Two of them pretended like they couldn't find where it was. And a Dr I saw last year wouldn't even give me a referral to the clinic because "CFS usually happens to older people".
     
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  12. lift

    lift

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    Just called up, they are not taking any new patients. Not even on a waiting list.
     
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  13. AndyPandy

    AndyPandy Making the most of it

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    @lift have you considered the CFS Discovery Clinic in Melbourne? I chose to go there instead of Griffith Uni.
     
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  14. Lynne B

    Lynne B Senior Member

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    Sorry to hear the Griffith Health Institute Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Specialised Clinic (phew!) isn't taking new patients. What can you do now? In Sydney, the Prince of Wales team do give comprehensive reports back to the referring GPs. If your doctor won't refer you, probably best to find one who will. It seems some GPs want specialists to make the diagnosis. The CFS Discovery Clinic looks interesting. Has anyone had helpful treatment strategies yet?

    @redaxe and @AndyPandy, did you get help from your choices?
     
  15. AndyPandy

    AndyPandy Making the most of it

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    Yes. I would recommend it.
     
  16. redaxe

    redaxe Senior Member

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    Is this the Prince of Wales group?
    https://medicalsciences.med.unsw.edu.au/community/lifestyle-clinic/services/fatigue-clinic
    The term chronic fatigue syndrome (CFS) is commonly used to describe the illness in general medical practice in which unexplained fatigue is the dominant complaint. Despite the lack of knowledge as to the pathophysiology of CFS and by extension the lack of treatment options targeting the cause(s), a number of interventions have been investigated 1.

    To date the most promising results have been achieved with cognitive behavioural therapy (CBT) [2-6] or graded exercise therapy (GET) [4,7,8].


    Sounds like they're confused between Chronic Fatigue and CFS/ME. Our dominant symptom is PEM not unexplained fatigue. And they're using GET/CBT which is useless to us. But I suppose if they can get you Centrelink benefits then thats something.

    Well I was put on Valcyte - It's far too early to tell if its working but I think there is starting to be some improvement but it's only been just over a couple months so far. I was told it could take several months before I really start noticing a difference.
     
  17. Lynne B

    Lynne B Senior Member

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    @redaxe Yes, the UNSW medical lifestyle clinic is the clinic the Prince of Wales immunology specialist referred me to. As I said, the psychologist helped me, partly by reassuring me through the tests that my cognitive functioning is still okay. Also, he suggested I go to a neurologist at Sydney Uni who diagnosed my small fibre neuropathy and eventually prescribed Lyrica and Cymbalta. The psychologist also recommended melatonin to help with sleep. As I said, the GET program didn't help. I had no energy left to to spend on it after getting through my day so I wasn't expecting it to work.

    I'm glad you feel Valcyte is helping, although early days, of course. Good luck with that, I hope it gives you substantial help.

    @AndyPandy, it's good to know the Melbourne CFS Discovery Clinic helped.

    cheers, Lynne
     
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  18. alicec

    alicec Senior Member

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    You would not be missing much. I visited the clinic in Jan and was completely underwhelmed by the experience. I did not have high expectations however so was not disappointed.

    I came away wondering what the point of the clinic really was since they offer no treatments and don't do extensive testing. Still I imagine it could be useful to get a confirmed diagnosis. They do say they will work out individual management plans but in my case they said they couldn't suggest anything I was not already doing.

    I had hoped for some interesting research-based tests but what they suggested for further down the track wasn't anything much and I haven't bothered to follow up. I had previously tried to get on their list of research participants but they didn't want me because I was taking a low dose beta blocker which I wasn't prepared to stop (does wonders for tachycardia).

    They sent out a detailed questionnaire which I filled out conscientiously and then wondered why I bothered since they didn't appear to read it. I had already been to a cardiologist and neurologist, had tilt-table testing, but this made no difference. Most of the time with the nurse was spent messing around with blood pressure readings supine and standing and answering basic questions trying to determine if I had OI. Despite my trying to circumvent this by referring to what I already knew she still went ahead with the various measurements that were on her list.

    @AndyPandy, does the Melbourne clinic offer any treatments however experimental?
     
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  19. AndyPandy

    AndyPandy Making the most of it

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    @alicec they arranged for a lot of testing. They suggested a range of different medications and supplements. Because I am so sensitive and my health is brittle, I have been taking my time working through the list of suggestions. They didn't get into antivirals, but my tests didn't reveal viruses.

    My testing revealed chlamydia pneumonia and I was given a script for antibiotics. I have decided to deal with methylation treatment first (they suggested it as a treatment) and immune boosting OTC supplements partly because I didn't think I was robust enough to deal with antibiotics killing bugs at this stage. Others on PR are in a similar position. Not well enough to take medications which might ultimately help them. For now, I am working with MTHFR Support by phone in Sydney for specialised advice on methylation and other genetic issues.

    More treatments may be suggested by CFS Discovery in future, but I am only ready to tackle one thing at a time. I figure it is going to take a while to improve my health and I am not prepared to risk making things worse by trying too much too quickly.

    I found them to be professional, caring and experienced. They were open to my input about treatment. You might like to give them a call and see if they are open to what you are seeking.

    Best wishes, Andy
     
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  20. alicec

    alicec Senior Member

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    @AndyPandy thanks very much.I will certainly think seriously about a visit. I have had a look at their website - I think I am already doing many of the things they talk about but there may be something else they can suggest. Anything is worth a try and a trip to Melbourne is no big deal.
     
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