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ME/CFS and the Magic of the Canine Factor
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Spanish HIV Experts Give Aid to ME/CFS

Discussion in 'Phoenix Rising Articles' started by Mark, Apr 13, 2013.

  1. snowathlete

    snowathlete

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    OK, here is a short summary of the key points for those of us who arent at our best at the moment:

    Researchers from Spain who usually look at the immune systems of HIV patients took a look at a group of ME/CFS patients. They looked at the different types of white blood cells in our blood and compared what they found with a group of healthy controls.

    They found that some types of white blood cell counts were higher than they should be, while some others were lower the normal. Additionally, they found that some of these cells didn't respond as they normally would. Overall this suggests that we have some immune impairment, which may explain why we get co-infections like herpes, etc.

    Some of these findings were very similar to previous findings in ME/CFS by researchers in Australia.

    These immune cell differences were strong and consisitant enough that if you put an ME/CFS patient's results next to a healthy person's results, you could identify which was the ME/CFS patient. So, it could be possible to diagnose ME/CFS with these markers - we'd have a blood test for ME/CFS. But it is an early stage in the research, so it has real promise, but we need more checks yet before we know this would work in the general ME/CFS population.
    Ritto, ukxmrv, Valentijn and 3 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Hi carlitos - I think it's great that you're encouraging people to support the petition but it's possible that the polling software can see the location of people (IP address, maybe) and would throw out any votes from those not from Spain. 'm concerned that this might undermine the legitimacy of the petition. If the government see that many people are voting from outside Spain, they may consider the results to be meaningless.
    Valentijn and SpecialK82 like this.
  3. maryb

    maryb iherb code TAK122

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    I have signed from the UK - I hadn't seen this thread - wonder if it matters? If enough people from around the world are supporting it too doesn't that make it as valuable?

    Just thought is it like the govt petitions here where you have to be a UK citizen to sign.
  4. Andrew

    Andrew Senior Member

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    I'm glad their curiosity was stimulate enough to investigate further, and I'm glad they were able to arrange funding. Others have been down this same path of research. I hope their research is more fruitful than the others.
    Simon, ukxmrv and snowathlete like this.
  5. snowathlete

    snowathlete

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    One thing that really encourages me is that there is actually a whole load of research going on. Sure, we dont get much govt. funding but we still have a surprising number of studies occuring and lots and lots of doctors working on the illness. More than you would think, because some of it doesnt get much publicity. One of the problems I have at the moment is chosing what to write about, or more specifically: what not to write about.
    Some studies come out of nowhere and even those we know about are moving targets, because they rarely finish and get published at the date originally thought.
    We're going to have more interviews, like the recent one with Dr Enlander, and we'll be asking each time about current and future studies so readers should get more visability of what is coming up in advance.

    As well as the big CFI pathogen study, there's more to come from De Meirleir and Lombardi, I think there are three different groups looking at spinal fluid: Natelson, Peterson and Baraniuk. I dont know if they are all finishing this year, but im looking forward to those. The CFIDS Association's drug repurposing study should be finishing this year too. I know there is more, I just can't remember it of hand!
    Valentijn, SpecialK82 and Sasha like this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The aussie scientists mentioned about their nk study are undergoing another now, so hopefully the more of these studies produced the closer they will get to having a test for cfs/me, i dont think they are far off. Once this is done hopefully then more people will be looking into treatments??
    snowathlete and Sasha like this.
  7. Plum

    Plum Senior Member

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    Thank you so much for the summary :) I will go through the longer post when I have time and am less brain fogged as it is awesome but it's nice for now to have an understanding of it. Thanks for taking the time to do this.
    elbosque and snowathlete like this.
  8. GcMAF Australia

    GcMAF Australia Senior Member

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    is good
    Some comments,

    they found low CD57 counts and Low CD57 is found in Lyme disease.
    Lyme Disease is rife in much of Europe. These people would not have been tested for many bacterial infections.
    GcMAF is being used for CFS/ME, Lyme and i beleive HIV. This indicates a possible common underlyng cause. More information should come out of the first GcMAF conference this next weekend.
    and also
    Excluding diseases such as diabetes, hypertension, chronic obstructive pulmonary disease, inflammatory bowel or Crohn’s disease, rheumatoid arthritis, Parkinson or Huntington disorders, schizophrenia, organic mental disorders, substance use disorders, multiple sclerosis
    maybe a moot point as diagnosis may be false. Many Lyme patients have been falsely diagnosed.
  9. SpecialK82

    SpecialK82 Senior Member

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    Thanks for this listing of coming research. I've often thought that it would be terrific if we could maintain a Master List, (maybe right here on PR?) that would show all, or most, research studies that are planned or underway, give an estimated completion date and publication date so that we as a community can look forward to these events, and also so that we would know what studies are in need of funding, etc. We would also be able to follow-up with groups who have gone over the projected time-frame and find out if there are problems.

    This is easier said then done of course ;), but if a list is set-up, maybe the whole community could submit research studies as they come across them and it wouldn't be a big burden on any one or two individuals. This might be a good project for the proposed PR Advocacy team to handle --------after all, if a research study can't continue due to lack of funds, an Advocacy team might be able to raise awareness about it.
    snowathlete likes this.
  10. snowathlete

    snowathlete

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    Thanks Dreambirdie.

    Good question about the Canadian consensus, which was available of course. I think scrapping the work and re-doing it under MEICC wouldn't have been realistic though, because of the costs involved with starting again.
    I suspect that not using severe cases was a consequence of the studies design to exclude people with known co-infections.
    Valentijn and Dreambirdie like this.
  11. elbosque

    elbosque

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    I echo this gratitude of a simple explanation. What i did understand is one of the things my ME/CFS doctor used to help confirm my diagnosis of ME/CFS two years ago. Back then my MD said my CD4 / CD8 ratio showed that my immune system was chronically activated. In successive tests after immune modulation treatment, it has stayed the same. Actually, one of the immune modulators was Imunovir which was originally an HIV/AIDS drug. My point is that my doctor and now the researchers I am seeing have been saying for quite some time that ME/CFS is an immune system disease. So this study is just confirming what other studies have show, right? Or is there something new from this study that I have missed understanding from the article?
    snowathlete likes this.
  12. Daffodil

    Daffodil Senior Member

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    sorry bad brain fog....so this spanish research suggests that CFS is in fact not autoimmune?
    snowathlete likes this.
  13. snowathlete

    snowathlete

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    Not quite. Their findings did support some previous research by another group, but they also came up with a model based on these abnormalities which perhaps could be used to diagnose ME/CFS in patients. In this sample, their model was able to distinguished between patients and controls. Its important to note however that the model would need to be tested against a new set of patients before we would know for sure if it would work as a diagnosis tool, or not.


    Well, these researchers who spend a lot of time looking at the immune system thought that if CFS/ME was an autoimmune condition then differences in the B cells would likely show up, and when they took an initial look at the illness when XMRV was happening, they saw some evidence to support that, but when they did a formal study they didnt really find the expected B cell abnormalites, and in contrast they found T-regs were up regulated which suggests we might have enhanced protection against autoimmunity. But I dont think they have completley ruled out autoimmunity, because there are some reasons still to think it may be autoimmune and there is not enough data yet to rule it out, but their study does not seem to support the autoimmune hypothesis.
    elbosque, Valentijn and heapsreal like this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The equivilant australian study showed that nk and cd8 t cells dont work well, so maybe its a combo of immune defincey/auto-immune issue. Explains why we pick up different bugs as well as unable to find 'one' particular infectious cause od cfs/me.
    snowathlete likes this.
  15. leela

    leela Slow But Hopeful

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    thank you so much, joel. very well done, and very inspiring.
    elbosque and snowathlete like this.

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