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confused!

Discussion in 'General ME/CFS Discussion' started by anna8, Jan 21, 2013.

  1. anna8

    anna8 Senior Member

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    I very confused! Is there a test or way of diagnosing ME/CfS? I didn,t think there was!
    My confusion is when people for example say that a certain diet or program for candida has helped with the brain fog, anxiety, sleep problems and overall wellbeing! But it has had no effect on there ME!
    So what is ME?
    Please excuse me for my ignorance!
    For me it has been very distressing that the medical profession do not know what is wrong with after have hundreds of tests! From reading other peoples stories they too have had many tests all negative so they get the diagnosis of ME/CFS.
    I would of thought it would be for me, that for example a certain diet helped with some of my symptom but not with others symptoms of ME/CFS!
    I know we all seem to have very similar symptom, that group us together! But I feel like I have missed something with the whole ME/CFS
    I hope I have made since!
    So please help me to understand!
    Anna8
  2. madietodd

    madietodd Senior Member

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    Hi, Anna. I think we're all very sorry that ME/CFS is so confusing. Nobody has figured this out yet, so we're all working on our symptoms, and trying to fix things as we figure out bits that aren't working right.

    I expect you've looked around enough to see that we all have issues in common with at least some people here, but nobody has the exact same profile. So a certain diet helps one person and s/he posts about it because it might help somebody else. But the diet is maybe fixing candida, which maybe caused brain fog in this person, and so there's some relief.

    Nobody has figured out a fix for ME/CFS.....one fix for everybody who lives with this. Some people have found the right mix of interventions, and have gone back to work. But this is highly individual, so I think a lot of us just keep trying things.

    I wish I could answer your question "What is ME?" I wish I could say YES, there's a test. But really at the moment, ME is just a collection of certain debilities not explained by any known illnesses, which have interfered with normal living for more than 6 months.
  3. peggy-sue

    peggy-sue

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    There is no official, recognised (by any medical establishment) test for ME.
    This does not mean that tests do not exist.
    The proper criteria to be using to diagnose ME are the new Concensus Criteria, published not too long ago, there should be a link to them here somewhere! However, these have not yet been adopted by anybody "official" in the establishment,
    I am clueless about things (drugs, supplements etc.) which have helped folk in the US - they're simply not available to any patients in the UK (because gps don't recognise ME as being anything physical and will only prescribe antidepressants).

    I don't know why folk go mad treating candida - but it also seems to be something folk who don't have ME get, so if you get it, you'd be as well off treating it. You don't need anything wearing your energy reserves down, and that includes various infections. I do not know if candida is related to ME or not.

    I don't know why some folk prefer certain diets. Personally, I never eat "junk food" or "ready-made meals" because I simply don't like them..

    Some folk might be sensitive to certain foodstuffs, so feel better eliminating them.

    Some folk might feel better just because they're DOING something proactive they hope will make them feel better.

    Personally, I have found that a high daily dose of EPA helps me a lot in general, sublingual Vitamin B12 helps my fog, Magnesium citrate (plus calcium to balance it) helps with restless leg syndrome and cramps, and that if I've really overdone things, a good dose of a carnitine complex supplement helps to prevent payback.

    It's all just little things that make the whole unbearable thing just a wee bit less unbearable.
    K2 for Hope and Valentijn like this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Anna,

    No there isn't a single test, but the right combination of tests (which few doctors know to give) will give a pretty good indication that a patient has or doesn't have "whatever this spectrum is." When I was given the appropriate tests, they were almost all abnormal and gave a pretty good picture of what was functionally wrong, though causation is still waiting for research.

    "ME" seems to damage some central mechanisms like the Th1 Th2 immune balance (for instance) and this (and other areas of damage) makes us very vulnerable to opportunistic infections and viruses. So yes, we treat some of those opportunistic infections or viruses and we usually feel better but we still have the "damage" that will continue to make us vulnerable and that throw off a lot of basic functions like the autonomic nervous system.

    I am not a science person, so someone else will be able to respond in a more scientific way, but this is my layman's impression, as a patient of one of the well known (and fairly successful with treatment) ME/CFS specialists.

    Best,
    Sushi
    K2 for Hope likes this.
  5. peggy-sue

    peggy-sue

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    I am of the opinion that the root cause of ME is in the mitochondria.
  6. Hip

    Hip Senior Member

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    A while ago, some of us on this forum were putting together an introductory document about testing and treating ME/CFS. If you find it useful, this document can be found here: ME/CFS Testing and Treatment Roadmap
    Valentijn likes this.
  7. anna8

    anna8 Senior Member

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    Thanks everyone for your replies!
    The reason I was confused is that from my understanding me is a group of symptoms as you have described! Which I have many as do most of us hear, I have read a few time have that although some things have helped with there symptom but had no effect on there me! So I thought I had missed something!
    I hope that has made sense as I find it hard to put my thoughts on paper so to speak!
  8. taniaaust1

    taniaaust1 Senior Member

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    I was one of the people who said that to you..sorry to confuse. I'll explain what I said more.

    I treated the candida with antifungals both topical and prescription and anti candida diet etc. I got rid of the vaginal thrush I was very prone to and almost constantly had at times that way. I used to get thrush right throu pregnancy and always after taking antibiotics and then it would be very hard to get rid of. Anyway.. the redness, soreness, skin cracks irritation etc the candida causes me went away.. but the ME/CFS stuff was no better at all. (I had a lot of trouble with candida well before I even got ME/CFS. I nowdays dont get candida at all even didnt after the last few lots of antibiotics so I think I can say I've fully got rid of the past candida issue).

    Its like this too with other things we can get or can often coexist with ME.. you can treat those things and the symptoms those things were causing may go away..but u will still be left with the ME/CFS.

    ME (im not refering to CFS when I say ME) is more then a group of symptoms.. there are certain tests in which abnormalities can often be found in ME. In my own case abnormal EEGs (of the ME kind), positive Rombergs test and other "ME test abnormalities". I suggest you to work out what subgroup of CFS you are so you are more aware of what kind of things to try and the advice it would be best following as thou we do seem to have similar symptoms. There are some very different patient groups which have coming under the label of CFS and what is good for some kind of definitions of CFS, may be not good at all for another "ME/CFS" group eg the ME group who have to be extremely careful with exercise and who GET and the kind of CBT most push isnt the answer.. If you know where you fit with things.. ME or CFS.. it can also aid in finding the right doctor for you as most CFS doctors are not ones who know much about ME. (Ive seen 6 CFS specialists.. none of them are very good for a ME patient as they dont know much about ME).

    To work out where you may fit .. check out the still fairly new ME international consensus guidelines to see if you have ME kind of things or not http://sacfs.asn.au/ (you will see the link for this if you scroll down on the right).
    Valentijn likes this.
  9. anna8

    anna8 Senior Member

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    Hi Tania, thanks for your reply!
    The candida thing was used as an example, I have read a few things that have confused me
    Mainly because I thought me/CFS was diagnosed at present as a group of symptom,your opinion differs it seems!
    It is very upsetting being ill with no explanation from doctors so it is encouragingly to know there could be a test to show some answers!
    I think I have had just one of those days when everything is getting to me, more than normal! I tend to over think everything these days..
    Take care anna
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My experience agrees with Tania's -- I have many, many abnormal test results that, taken together, point to an ME diagnosis--as does my medical history. One of the problems we have is that there are so few doctors who know what tests to give--or have even heard of such tests, let alone knowing how to read them.

    Take care, more research is coming and we will have more answers in the near future...I hope!

    Sushi
    justy likes this.
  11. anna8

    anna8 Senior Member

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    Total off the subject, but if things are not bad enough at the moment, I've just broken down at the petrol station! I need a new battery!
    I was on my way to the hospital more tests!
    Anyway I guess the whole subject of ME/CFS is very confusing! But I feel more happy with my confusion! Ha! Ha!
  12. taniaaust1

    taniaaust1 Senior Member

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    What's that saying.. it dont rain but pours...

    I hope you managed to sort your car out fast and get to the hospital for the tests. (dont be discouraged if they dont show up anything thou.. it helps if doctors know where abnormalities are likely to be found).
  13. anna8

    anna8 Senior Member

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    Thanks Tania!
    Had to cancel my appointment that's OK I really did't want to go I've had enough of hospitals! But car is fixed!! Hurrah!
  14. justy

    justy Senior Member

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    Hi Anna, i agree it can all be very confusing. In the beginning i couldnt tell the difference between say symptoms of M.E or candida, as they overlap so much. Often the same things happen when i catch another bug or something - i dont know if i am ill with a bug or if its the M.E getting worse. usually i can only tell it's a bug because either someone else in my family gets ill (although there illness can differ a lot to the way mine reacts) OR i get better within a few weeks and can then look back and see i had a bug, not a crash.

    With the candida, i did say that some of my symptoms improved, but not the M.E. What ni meant was that i had such severe brain fog that i felt stoned or drugged all the time and felt very very 'spaced out', especially outside. After treating the candida, this dramatically improved - but i still had cognitive problems and a fuzzy foggy head. It was only after some time that i realised, retrospectively that the diet had helped (by fixing the candida) but i was still ill with M.E. The main way i judge this now is that even if something makes me feel a bit better or gain functioning, i still get PEM - a worsening of all symptoms for days or weeks if i overdo it and the crash comes days after having overdone it.

    I hope this makes some sense?

    In terms of tests, i agree there are many tests we can have that show abnormalities - these tests are not commonly available and have to be paid for privately or through an M.E specialist. The specialists can tell if your tests look like those of other M.E patients - wether you have similar abnormalities showing up. I had this with the Mitochondrial profile testing which showed severe abnormalities, very much the same as other people with M.E who have had the tests.

    The problem is the tests are NOT specific for M.E only. The tests showed i was very ill - but not what with. Mnay other illnesses show up the same abnormalities, such as MS, Lupus etc.

    I am at the point now - after many years of illness hwere i am beginning to fail standard blood tests - i have noticed this can happen with some long timers - my GP thinks its because M.E may be an autoimmune connective tissue disease - a bit like Lupus etc and with these illnesses you can have no blood abnormalities for years. Unfortunately the tests i'm failing are either non specific or just make my GP scratch his head even harder.

    All the best, Justy
  15. anna8

    anna8 Senior Member

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    Thanks justy for taking the time to explain!
    The whole me/CFS thing is obviously a lot more complicated than I thought!
    Best wishes anna

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