Hi Lansbergen. Well unofficially, then yes, some PWME do have very low PrPC, almost absent.
You can test yourself here, experimentally:
http://redlabs.be/red-labs/ordering-tests/request-forms.php
Low blood PrPC isn't much to right home about in terms of a specific disease process. Really, you want CSF (spinal fluid) PrpC to be through the floor for anything 'dodgy' to be suspected as
neurological. Additionally one can't do anything with the result of missing PrPC for sure, the test is experimental and not 'proof' of much.
Where things get interesting for me as a science hobbyist, is if a misfolded prion test becomes available, such as a saliva test, or sexual fluids test. (One theoretical worry here is if theoretical ME rogue prions are transmissible between close contact people). A mother breastfeeding her child included of course...
In terms of ME, I am speculating this would only affect family members, or we'd all have ME in some way or another and we don't. There are only 'clusters' (as in vCJD (human BSE).
http://www.telegraph.co.uk/news/uknews/1348584/Missing-link-in-villages-CJD-cluster.html
I also think sexual transmission of the putative agent behind 'ME' is a possibility. (Some PWME/CFS claim they 'caught' their condition from their sexual partner, as do PWLyme). Remember that paper on Lyme sexual secretions in married partners?
http://www.onlineprnews.com/news/45...y-be-sexually-transmitted-study-suggests.html
Yet most? PWME can't have sex. So the incidence (if ME is a genetic STD) would be much lower than the average person 18-50 who is sexually active and making babies.
I think if the same ME patient is proven to have very low PrPC in conjunction with exceedingly high misfolded prion protein levels (potentially allied to 'ME') - and then allied to a certain class of novel infection, then, things get interesting. I don't know if you know, but in BSE, the normal PrPC is transcribed to the roque prion PrpSC. Thus, theoretically, if a human has absent PrPC
and has a mystery neurological disease (such as ME), things aren't exactly looking up for them if this was repeated in CSF by spinal tap. But, as already mentioned, no proof at all that
blood PrpC loss means your brain is affected, infected, inflamed etc. It just makes the
possibility more likely in % chance. Skeptics might say 0.0% rise to 0.1%.
In my view, if a finding of loss of PrPC in PWME can then be repeated (biomarker diagnosed PWME) by finding the same thing either in tissue (lymphoid tissue) or CSF fluid then basically you could propose that ME, is associated to a prion misfolding process, perhaps leading to cognitive dysfunction or immune suppression/activation. (
Activation leading to suppression).
A paper I read ages ago in animals showed that if you infected the animals (can't remember which) the brain is infected via the gut (Spleen I think it was actually). Maybe I'm confused as it was injected in the brain, and the prions were found in the Spleen? (My memory is bad, sorry).
Either way, the 'bad' prion (PrPSc) traveled via the lymphatic system = major bad news for the animal. Either way, this is more alarming if the human host doesn't have much of a blood brain barrier. Many have
proposed, and I guess in the future you can
prove, that certain processes diminish the blood brain barrier and let pathogens in to PWME's brains. More rife speculation, this could be one method of how 'we' get Lyme or co-pathogens (Mycoplasma?) in our brains leading to cognitive impairment and other neurological disabilities. (NB: Impossible to prove with current technology without a brain biopsy in ME patients). Who will autopsy people who need CBT/GE? No one. A tiny percentage of patients. Handfuls worldwide. Without the psych lobby, this never would have happened. However, it is what is is now and we can't change the status quo without robust scientific evidence (that isn't funded in large scale studies sadly).
Theoretically, away from animal models of prions of BSE, the same could happen to PWME if they have a stomach pathogen, or some other pathogen that infected lymphoid tissue that worms its way up into your brain to cause a chronic low grade, immune response via HERV's utilizing prions. DeMeirleir's paper found immunoreactivity in ME stomach tissue (notice tissue, not blood), to retroviral proteins in a tiny number of patients and no controls.
http://www.ncbi.nlm.nih.gov/pubmed/?term=meirleir retrovirus
I wouldn't be shocked to see a group of scientists announce that subsets of very severe ME is a potential prion disease caused by HERV's, perhaps associated to a Lyme like pathogen, turbocharging retroviral or its own bacterial genes (and you get an autoimmune response from this).
PWME have an RN-aseL defect called low molecular weight RNase-L. With a RN-aseL defect, you have little defense against RNA Viruses - a slight problem as you'll always be sick due to cross infection unless you live in a cave. Retroviruses are RNA viruses that reverse transcribe into DNA viruses for life and infect the host, forever genetically. NB: Reverse transcriptase (RT) has been found in PWCFS by Elaine De Freitas, and others in the 1990's. Thus PWCFS
do have some form of retroviral activation going on and the 2011 Lipkin study of ending all retroviral CFS research once and for all, was clearly political if you consider the past research on 'CFS' was ignored when it comes to the finding of RT decades before 'XMRV'. (No one was told this, in the anti Mikovits blogs of course). Why tell the truth? People just want more answers. So the 'truth' is selective. Control the masses, keep the patients uniformed, then they demand less, and have less power as a community, as a movement, as a minority.
Naturally, people with a modus operandi fooled the public and concentrated on the fictional human infection (of one form), 'XMRV'. Behind a 4 letter label, there are of course, limitless forms of 'XMRV' and retroviruses though! Not just the one Silverman created in his lab and incorrectly associated it to CFS in 2009 by contaminating the WPI samples. (Novel retrovirus was isolated from patients and photographed by Elaine De Freitas as well in the 1990's). Mikovits was not the first.
In a subtle condition like ME (patients don't commonly die unlike untreated HIV), there doesn't need to be a whole retrovirus, there could just be a dead floating around gene envelope in ME (such as the neurotoxic SFFV). CFS and controls had antibodies to SFFV in the Alter/Lipkin paper at 3%. Link to PDF:
http://mbio.asm.org/content/3/5/e00266-12.full.pdf+html
SFFV research is the reserve of cancer researchers. And yes, the inference is lab science accidentally caused recombination pathogens to exist in humans by (unaware at the time) new vectors, such as aerosolisation of retrovirus that mixed animals and human tissue such as by xenografting practice.
It's easy to just concentrate on fatigue using no screening tests and less so on culpability of an honest accident. For that you need a distraction; psychologists encouraged to propose a theory for behavioural changes (their own religion) in the infected host. Fund then handsomely to maintain the ruse, whist starving biomedical science of appropriate levels of science funding for those with inflammatory disabling disease.
That's how we all ended up in this mess. I got sick as a kid and I'm old enough to be a grandparent. Times me by tens of millions of people and you have a huge problem hidden in plain sight. Just call it CFS and no one will care. When autoimmunity develops, deny Chronic Lyme and no one will care either as they'll all 'suspect' patients with loopy ideas with normal Full blood counts and X-rays. (As are people with MS).
But find evidence you can give it to other people, such as from a babies pacifier? (If mom is infected and babies have poor immunity), then they really can't hide that. Women who develop CFS in the middle of a pregnancy cannot donate cord blood. Why is that? Did their neurosis (needing CBT) pass onto the baby unhindered, but could be given to another person if the stem cells are utilised? No, it's about what umbilical stem cells harbour that are potentially transmisisble, hence the UK Ban for CFS moms with child.
Independent researchers are our only hope. Good people exist in science, they're just broke!
