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Has anyone been completely cured of CFS?

Discussion in 'General ME/CFS Discussion' started by cosmo, Jul 19, 2013.

  1. cosmo

    cosmo

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    This is really interesting to me at this moment in time.

    I am having very strange things happening, including completely collapsing and fainting. My heart scan looks good apparently and the Dr said about a tachycardia perhaps. Reading about POTS I wonder if maybe it has something to do with it perhaps.
    Allyson likes this.
  2. cosmo

    cosmo

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    A few more details.
    My specialist says it is caused by stress.

    They think that if you follow the programme and meds you will get better, if you don't follow it you make yourself ill.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    What programme and meds? What are they saying is caused by stress? And what type of specialist?
  4. cosmo

    cosmo

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    A CFS specialist.

    They believe the whole of CFS is caused by stress.

    The programme is rest, but including daily housework for a few hours in the 'pottering' and no tv or computer or reading.

    Meds are Amytriptaline (100mg) of a night and prozak in the morning.
  5. peggy-sue

    peggy-sue

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    That sounds like Dr. David Smith's pet "theory". :mad:
  6. cosmo

    cosmo

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    That is right Peggy Sue, my Dr follows that practise, that is why I posted on the Dr Smith thread before.

    Can I ask what you mean by pet theory please?
  7. peggy-sue

    peggy-sue

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    By "pet" theory, I mean that he's about the only one to have come up with it, and that he is personally nurturing and promoting it, rather than doing proper scientific research, or, in the case of Smith, even getting the basic science right in the first place.

    I am of the opinion that his unsubstantiated theory, not even based in scientific fact, is dangerous.

    He is recommending drugs which are contraindicated in combination with each other, both of which can have serious negative consequences on their own (far less in combination).
    ME is not caused by stress anyway and ME sufferers often react badly to those drugs. I could not tolerate 10 mgs of amitriptyline, far less 10 times that.

    However, if you are happy with it and finding some success with it, I hope it continues for you.
    I will not be trying it.
    taniaaust1, beaker, Valentijn and 5 others like this.
  8. cosmo

    cosmo

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    Oh I am not happy with it at all and cannot tolerate drugs such as those.

    That's really interesting what you have said, thank you so much.
  9. xchocoholic

    xchocoholic Senior Member

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    great discussion. thanks.

    fwiw i wanted to add that findin and treating other possible causes of someone's
    cfs or me doesn't always equate to that pwc losing all of their cfs symptoms.

    I was told when i was dx'd with celiac disease that i wasn't a pwc anymore
    but without knowing exactly which tests confirm cfs i still consider
    myself a pwc. I was hoping I wouldn't be but it's been 8 years now
    i still have pem, etc. I was dx by a respected cfs specialist so
    I trust my dx. I was just hoping it was wrong.
    Allyson likes this.
  10. Allyson

    Allyson *****

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    saying something is cause by stress is vague and unhelpful IMO

    they used to say that unequivocally about stomach ulcers until they found the actual cause was a bacteria

    Ally
    beaker likes this.
  11. Allyson

    Allyson *****

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    Yes Cosmo - POTS ill not show up on a cardiac ultrasound - you need to find someone who knows how to test for it - May docs have still never heard of it and will sa you do not have it out of ignorance alas.

    It does sound like it matches some of your symptoms and is a very common ME /cfs symptom though often goes undiagnosed. There are lots of POTS groups on Facebook where you find a doc in your area and more info about it.

    Also there is more in it in this link
    http://forum.notcrazy.net/index.php?topic=9571.0

    best of luck

    Ally
  12. cosmo

    cosmo

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    I don't think mine was caused by stress anyway.

    My fatigue symptoms came on after a really bad virus, but the specialist says that every case is caused by stress, no doubt!!
  13. cosmo

    cosmo

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    The Dr who did the scan was mentioning about POT's etc and all kinds of things, she really knew her stuff and was talking of the times when she worked in a hospital with a tilting table. I may have a talk when I go back as I am having a 24 hr heart monitor fitted in a few weeks, she may be able to talk to my GP.

    It does seem to fit my symptoms a lot, but then again so does many other things!
  14. ruben

    ruben

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    suffolk
    On the subject of the lightning process and things along similar lines this is something which had occurred to me. I think I'm right in saying that last year sometime, it was reported on on here that some money was being put up to establish the effectiveness or otherwise of the Gupta training programme. Then also last year there was a documentary on the BBC Alba channel about Mickel therapy. I believe too that the Lightning process itself is being looked into by the NHS.My point is that it seems that the people behind these techniques are more than happy to have their approaches highly scrutinized. It doesn't really seem like the behaviour of anyone involved in something dodgy. At this moment in time I'm simply open minded about them.
  15. peggy-sue

    peggy-sue

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    They are all psychological treatments/therapies/processes. They may well help with psychological problems, perhaps faster than accessing any psychological therapies via the NHS, and only if you can afford them.

    They will not help non-psychological illnesses.
    Valentijn and Roy S like this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Well, perhaps they reason that, as the NHS has clearly been taken in by some psychoquacks already, they are open to being taken in by others.
    Valentijn likes this.
  17. peggy-sue

    peggy-sue

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    I think there has been some objection to the study on the lightening thing in children - on the grounds that it is unethical.

    I saw it on the MEAssociation site, I think. I've not been there for a while - they've changed the format which makes it very, very difficult to navigate or read anything- there's a huge, fussy, brightly coloured background that knocks my eyes for 6.
  18. Snow Leopard

    Snow Leopard Senior Member

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    100mg! Maybe it is just me, but I am really sensitive to Amitriptyline, I actually get POTS symptoms (as in I can't stand up) when taking more than 25mg.
  19. peggy-sue

    peggy-sue

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    I found 10 mgs to be intolerable. I was fainting everywhere and completely spaced out. The collapsing and fainting continued for several weeks after I stopped it.
    I got quite used to it, mostly managed to get on the floor before I hit it, yelled at my OH to bring me a pillow and blanket and slept for 3-4 hours. Generally on the kitchen floor.
  20. barbican1

    barbican1

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    it is common knowledge that stress lowers the body's immune system
    MeSci likes this.

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