Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Nk cell defiency syndrome, mm looks alot like cfs/me to me.

Discussion in 'General ME/CFS News' started by heapsreal, Jul 5, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    http://www.uptodate.com/contents/nk-cell-deficiency-syndromes-treatment

    Interesting. I find that its interesting where it mentions antiviral prophylaxis for virus common to cfs like ebv/cmv etc. I think if someone is negative to a retro virus but has nk dysfunction then maybe nk defiency syndrome is a sub set of cfs which would then wrap up most of the viral infections into this one sub group, also help distinguish between those who are diagnosed as 'pure' ME with lots higher neurological symptoms with brain scan abnormalities/brain injury and those with chronic viral infection with nk dysfunction.

    I also wonder if nk function tests arent commonly done outside research situation as this could potentially take away from the psychobabblers client base and also cause they arent real sure on how to treat it????

    cheers!!!
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1424699/
    I added this link/study as well as it shows how common the herpes infections like ebv/cmv/shingles etc are in those with nk defiencies.
    It amazes me that this information is out there but they cant link it to cfs/me who have this immune defiency as well.

    cheers!!!
     
  3. Enid

    Enid Senior Member

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    Thanks heapsreal - very much part of my own "findings" and I did have full blown ME too (Encephalitis end of the spectrum). You do bring in interesting things. For my own part I did have clear dysfunction of the Immune, Endocrinal and Neurological systems at various stages and to varying degrees. Nk cell deficiency though I've long suspected the "common" ground. (Symptoms of just about everything from Polio to Hepatitis and Measles - Immune system crash ?).
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Good point, i also wonder if the longer u have an infection the more neurological damage caused, also the severity of the initial infection as well. Im finding the longer i have me/cfs the more my memory and sleep and other neurological symptoms worsen.

    cheers!!!
     
  5. ukxmrv

    ukxmrv Senior Member

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    Hi Heapsreal,

    I had NK killer cell tests done about 6 years ago (in addition to the Th1/th2 type tests previously) but these were not accepted as real tests or relevant tests by the UK NHS. It certainly didn't have any effect on the psychobabblers.

    My medical file is full of immune system and other tests. They psychobabble crew argue that mentally ill people also can have test abnormalities and that they can rehabilitate us or even change these through CBT, GET etc.

    At a UK meeting at the House of Commons (The Gibson Enquiry) there was a claim by that lobby that CBT could change the gene expression shown by Kerr et al in CFS patients.

    The red flag from that website you posted was a "small number of cases described in the literature". It's seen as another "fringe" diagnosis.

    Not sure how a conventional doctor in Australia would view this. If s/he has an open mind about ME then they will be interested in NK cells. Most UK GP's have never heard of NK cells.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi ukxmr, i get the impression that uk drs and gp's get told how to think. In australia their thinking is more of a guide from authorities, so the lazy docs here follow the guidelines and the docs that think for themselves which is few, can see that cfs/me is a immune/infectious condition and would see these research tests as confirmation of these abnormalites. When i first had cfs, the first few docs were like the typical UK docs seem to come accross and treated me like i had depression. then there were a few docs who new that we/I had cfs that wasnt psychosomatic but didnt have a clue what to do, although they could help with some symptoms. But actual doctors who knew about cfs/me are very rare but help confirm that we arent crazy and can help with off label treatments and these docs that go out of their way to treat cfsers and maybe classed as a specialist, there would only be a handful in australia, but u can find them, which seems almost impossible in the UK and i suppose if a doc in the UK prescribed Antivirals he would lose his license.

    As for the nk function test, all i can say is that researchers here in australia have/are designing a test for cfs with nk function and are now working with dr peterson of lake tahoe fame from the US outbreak of the 1980s. They seemed to have improved on previous nk function testing and as all good australian inventions, someone from overseas takes these plans and makes money from them and australia wont see any benefit from it for a few years after the fact, hopefully this isnt the case this time. Hopefully the yanks can run with this and sort out this cfs/me mess and the UK and australia will have to follow suit. The waiting really sucks.
     
  7. ukxmrv

    ukxmrv Senior Member

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    Hi Heapsreal,

    I've heard of the Australian study on NK cells from the Ozme list. I hope that the NK test that the Australian researchers work out is better then one used in the UK. There is one available through a UK hospital that has a "fatigue clinic" but it's not very comparable to others from abroad.

    There are doctors in the UK prescribing antivirals and immune modulators but as you said in Australia, few and far between and likely to be hit by the General Medical Council. It's a post code lottery if one even sees an Immunologist who has an understanding of these drugs and tests.

    There are plenty of Australian patients who have travelled abroad, got the tests and they still have problems finding doctors in the country to treat them.

    It's going to take more than a test to counter the psychobabble group and all the other people who try to explain away CFS.

    I wonder how Andrew Llloyd will explain away or counter this research? He is very vocal and for a long time has been fighting these ideas.
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Theres a couple of docs here in close contact with KDM and also previously mentioned about an aussie uni involved with petersons group, i think they have enough clout to over come lloyds issues, after all its his study that shows 10% of ebv infections dont recover to 100% and these other guys can know explain this and back it up with enough science to put him on the back foot.
     
  9. Enid

    Enid Senior Member

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    I hope things are going better for you there heapsreal - you've well understood the picture here. At least some ME/CFS specialists are working together/combining findings to unravel causes etc. now. Not so usual according to Prof Steve Jones (Genetics UCL) in his "View from the Lab" article in today's Daily Telegraph commenting on a new book "Free Radicals - the secret anarchy of science"......bitchy infighting is rife ......again and again, personal dislike and prejudice determine who gets the grant, the Chair or the Nobel Prize with some bizarre results. It explains much in the world of ME. UP your own researchers !. Would that we had Docs here in close contact with K de M too.
     
  10. Megan

    Megan Senior Member

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    Thanks heapsreal for keeping us informed of the Bond uni research. It seems to be the most exciting thing happening here at the moment.

    Do you know the difference between the NK cell tests they are doing and those that have been done/developed elsewhere, eg those by Nancy Klimas or Dr Demeirlier? I think Dr Demeirlier's test is based on somethin called 'perforin', though I'm not sure if that's how you spell it.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Megan, the differences in the NK testing i think is that they are measure 2 subsets of nk cells ie nk dim cells and nk bright cells as well as nk activity which i think is the older testing version of nk cells. What they are mainly finding is that the bright cells are functioning poorly. My results reflect this showing my bright cells are poor and the dim cells seem to be functioning normally. Another thing i have found interesting for me is that the general nk cell activity test has jumped around from very low to normal range even though my bright cells have been low all the time, but the nk cell activity was above the normal range when i was using cycloferon(immune stimulant) and feeling somewhat better although the bright cells were still functioning low. We have been tested every 6 months over an 18 month period
    Here is my last test result, now the reference range is from a healthy control group and note i was also on cycloferron and famvir at the time of my last test.
    nk cell activity 51.91 (13.8-34.8), while on famvir this reading was 33 when tested, no av's or cycloferron reading was 6
    nk dim cells 73 (60-88) been stable whole time
    nk bright cells 1.95 (5-15) this is the common abnormality they are finding in the cfs group. previous tests were 4.32 and was feeling almost normal, another test was 1 and was feeling very crappy at the time and was on no av's or cycloferron.
    Note that some improvement was with antivirals and more improvement with antivirals and immune modulator cycloferron, this is my subjective response and some lab responses but also note that the nk bright cells didnt really seem to respond though. Also my response to av's is probably because of cmv reactivation for which av's have helped. My treatments obviously arent perfect but shows that they have had some effect, though of late thats debatable although higher av doses seem to be helping.

    It will be good when they can make this test commercially available as i think it can not only help with diagnosing cfs but also track effectiveness of treatments too. It will also be interesting to see how dr dan peterson uses this test if he does, maybe to track how the immune system responds to ampligen, but thats just a guess.

    cheers!!!
     
  12. taniaaust1

    taniaaust1 Senior Member

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    I personally think from my own experience that even when we are getting severe neurological symptoms we can usually end up recovering from those. I dont have anywhere near the degree of neurological issues that I used to get. (I think we must be getting lesions in spinal cords and brain which are temporary or something).

    Neuro symptom intensity thou does seem to vary on just how sick one is at the time (the sicker I are.. the more neuro issues I get).
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    It depends what we class as neuro symptoms as i think many of us might class them differently. I class my sleep problems as a neuro symptom as well as the head stuufy brain fog and memory etc, pain can also come under a neuro symptom like leg pains etc Blood pressure problems as well could come under neuro problems as bp is regulated by the brain as well as hormones. The more u think about it the whole lot sounds neuro??

    cheers!!!
     

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