australian study, cfs autoimmune

Discussion in 'Fibromyalgia Main Forum' started by heapsreal, Nov 23, 2009.

  1. heapsreal

    heapsreal New Member

    hi all, went to information seminar, was interesting. Due to a smaller study they have done they are persuing cfs as an auto-immune type disease, they found 2 types of immune cells in cfs patient that arent in healthy controls. Now there doing a bigger study on this. We filled out a questionaire which will put us in groups of either a fatigue state or chronic fatigue syndrome, plus there is a control group, think a total of about 300 people. We will have blood tests done every 6 months for 18-24 months as well as more questionaires.

    They seem to think that cfs is just triggered by a virus/illness etc and the immune system is kept going by vasoactive neuropeptides(not sure what that is but will be googling). We were given a book called 'chronic fatigue syndromes and vasoactive neuropeptide autoimmunity' not sure if this book is available to the general public, but will read it and bring this info here.

    They are also looking at starting a support group there where we can trade info/socialise etc.

    They seem very confident in their theory, not sure if they are onto a treatment a such yet either. After some googling briefly last night did see an article mentioning autoimmune problems and xmrv. Sonia the lady running the study has close ties with US experts that are into xmrv and they know of her study and are very interested in her results, so maybe it ties in some where.

    It was also mentioned that this is one of the largest grants given to study cfs. So maybe there are politicians out there who have relatives with cfs, lol.

    will keep in touch, cheers

    this is a link to one of the docs in the study, donald staines and his hypothesis, very similar to book we were given.
  2. heapsreal

    heapsreal New Member

    after a quick read of the book i was given, it seems that vasoactive neuropeptides control many functions of the body. Was told at the seminar that vasoactive neuropeptides are a new discovery, within the last 10 years(if my memeory is correct, was alot of info to take in so some things are coming back to me slowly, lol), and now they are discovering there function , so its very new science.

    This seems to explain alot of cfs/fm symptoms, and maybe alot of these infections we get are opportunistic infections(treating these does help, but doesnt seem to cure),i was am a big believer in chronic infection cause of cfs but after reading this book Im thinking twice.

    Not alot was said about treatment, although dr staines did mention a study in one of the scandanavian countries where a few cfs people ended up with lymphoma and were successfully treated for lymphoma which entailed knocking out their b-cells(type of immune cells) and also had a recovery from their cfs but to keep cfs at bay these b-cells had to be knocked out every 12 months. Some other drugs were mentioned too.

    These peptides are also involved in many neurotransmitters like serotonin, noradrenaline, dopamine, gaba, all those ones we all know about and the use of snri's was mentioned in being helpful for some people with pain and fatigue. So alot of these drugs that have been helpful but not knowing why, they seem to now know why these are helping, maybe develop better drugs as we all know some of us cant handle snri's. Tricyclics were talked of highly. So nothing really new on treatments but probably holding their cards close to their chest on that one. Alot of other conditions were also related to these peptides.

    Struggling to take this info in. Just hope its worth it.
  3. QuayMan

    QuayMan Member

    Thanks heapsreal.
    We need researchers to be able to test out their theories. Lots of theories can seem plausible on paper but many don't turn out to be true on testing.

    I think tricyclics have helped me in a few ways but I think they've caused weight gain so a similar drug that didn't have that side effect would be great.
  4. denis321

    denis321 New Member

    I read the paper you alluded to: Norway study on rituximab in a few CFS cases who also had cancer and were given rituximab for the cancer. They saw some resolution of symptoms weeks-months after the treatment but it was a temporary resolution. A clinical trial is going on there now.

    Rituximab is a cancer/ auto-immune drug which uses your own immune system to kill off certain immune cells called B-cells temporarily. Some cancers are related to uncontrolled growth of these B-cells while some auto-immune diseases occur because of B-cell overactivity so killing off B-cell helps with these illnesses.

    Aside from the autoimmune theory, another reason why rituximab might work for CFS is by killing B-cells, it might lower the viral load of whatever virus is in our system. E.g. the current thought is that XMRV resides in B and T-cells so killing B-cells would release XMRV into the blood and this might make it easier for our immune system to attack it.

    And of course, if the viral hypothesis is correct, having a constantly stimulated immune system will increase your chance of autoimmunity.

    The autoimmune theory is interesting but I'd like to see it explain the clusters and epidemics of CFS cases we've seen. Anyhow, hopefully we'll have some answers within the next year.
  5. Lono83

    Lono83 New Member


    Do you know if they are testing participants vasoactive intestinal peptide levels as part of the blood work? Have you had yours tested?

    I keep hearing about a good number of CFS/ME folks who have persistently low levels of vasoactive intestinal peptide (though it doesn't seem to be the case for all of us). My score is terrible - very low.

    It's pretty easy to get this test in the US (can be done through Lab Corp - test#10397 - and I've never heard of anyone having trouble getting insurance to pay for it).

  6. heapsreal

    heapsreal New Member

    so far we have had blood taken, there was mention of testing function not just numbers of natural killer cells, i know they are testing other stuff but dont know, we find out our results from first test in april, so will keep u posted.