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Anyone here used HIV/AIDS treatment for CFS?

barbc56

Senior Member
Messages
3,657
Being old does not mean necessary that is wrong

Nor does it imply it is right.

While there are certainly politics involved, if someone were to find a cause or cure fot me/cfs, it would certainly get great fanfare, a person's career would be furthered enhanced and they would probably win awards for discovering the cause/cure of a little understood illness.

I think the line of research that cfs/me is an aids like illness has been explored enough that it's time to move on to more promising leads.
 

asleep

Senior Member
Messages
184
Nor does it imply it is right.

That's not what sorin implied.

While there are certainly politics involved, if someone were to find a cause or cure fot me/cfs, it would certainly get great fanfare, a person's career would be furthered enhanced and they would probably win awards for discovering the cause/cure of a little understood illness.

This is just roundabout appeal to authority, the idea that awards, prestige, etc, conferred by those in a position to do so, signal or determine what is true. Mix in wishful thinking and you've managed in a single sentence to give hollow acknowledgement to the dangers of political influence on science before abruptly ignoring it.

Those who are not intrinsically wedded to the assertions of authority in all its forms and from all its mouthpieces will never be persuaded by these types of appeals. They know, whether instinctively or through historical and cultural observation, that not all is right in the sciences.

I think the line of research that cfs/me is an aids like illness has been explored enough that it's time to move on to more promising leads.

You are of course free to move on. No one is stopping you :)
 

JES

Senior Member
Messages
1,323
Those who are not intrinsically wedded to the assertions of authority in all its forms and from all its mouthpieces will never be persuaded by these types of appeals. They know, whether instinctively or through historical and cultural observation, that not all is right in the sciences.

The scientific procedure is the best tool we have to find evidence-based treatment for illnesses. Of course politics are involved, but to suggest there is some global conspiracy preventing every scientist on earth from doing research on CFS and HIV is silly.

If there was a link between CFS/ME and HIV, it would most probably have been found by now. There is some very good research going on right now in USA with Prof. Ron Davis, Dr. Montoya, etc. They have looked at almost every possible cause for the disease, they have gone much deeper already than looking for obvious things such as HIV in the blood.
 

asleep

Senior Member
Messages
184
The scientific procedure is the best tool we have to find evidence-based treatment for illnesses. Of course politics are involved, but to suggest there is some global conspiracy preventing every scientist on earth from doing research on CFS and HIV is silly.

If there was a link between CFS/ME and HIV, it would most probably have been found by now. There is some very good research going on right now in USA with Prof. Ron Davis, Dr. Montoya, etc. They have looked at almost every possible cause for the disease, they have gone much deeper already than looking for obvious things such as HIV in the blood.

The question is clearly broader than HIV and encompasses retroviral involvement in general. More to the point, as far as politics are concerned, I think the true issue is whether the scientific community is honest and objective enough to evaluate the existence and effects of its own unintended consequences. A few self-congratulatory but token examples of scientific "self-correction" aside, the non-true-believer view shows them to be deeply intractable to such issues, especially when money, prestige, and axioms are at play. I'm not sure how that fits into a binary conspiracy/non-conspiracy worldview though.

I hope that Davis and Montoya do find something, but it's rather hubristic to think that anyone could evaluate "almost every possible cause," especially when certain threads of inquiry are conspicuously left out.

There is wonderful irony in the large amounts of digital ink spilled by some in desperate attempt to convince others of the great insignificance posed by certain topics.
 

sorin

Senior Member
Messages
345
They have looked at almost every possible cause for the disease, they have gone much deeper already than looking for obvious things such as HIV in the blood.
Let's not make things ridiculous on purpose by misrepresent words. Of course is not about HIV itself as we know today, HIV-1 or HIV-2 but it may be about a virus from the same family with HIV which is not known yet or not recognized officially. That's all, simple said.
 
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sorin

Senior Member
Messages
345
This is just roundabout appeal to authority, the idea that awards, prestige, etc, conferred by those in a position to do so, signal or determine what is true.
This is absolutely brilliantly said!
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
HIV/AIDS combination treatment will work for those with activated HERVs who can tolerate the side effects.

HERV's are increasingly associated to many chronic disease states, not just HIV (HERv's are found in HIV brains!).
The matter of numbers (of CFS patients) taking antiretrovirals at this point in time doesn't matter any longer, other than the fact that it's a thing (real) and not a story.

I used to think ARV's in CFS was a story, until a trusted source told me in person it's real who wasn't a patient. I thus upgraded my 'source' of truth from an internet rumour to reality, and felt a certain sense of relief: initially for other patients getting some help (a subset I should add), and also then for myself and people like me, that there is some real hope coming in the future.

Future treatments for organic CFS ME appear to be (potentially):

Mitochondrial support based on cutting edge research
Antiviral and antiretroviral therapy for ME - based on cutting edge pathogen research
Autoimmune therapy (inc for POTS) + B cell depletion for subset of CFS autoimmunity


At the end of the day, for patients with evidence of (clinical signs), e.g. biomarkers of (chronic retroviral infection), then in this case, the use of Antiretrovirals, in my opinion , is nothing controversial or even huge, it's just it's huge to us as patients when people with CFS could have been offered to them a long long time ago if the CDC crew handn't of silenced De Freitas. (We have all been brainwashed into submission, due to lack of 'evidence' of how we feel - we feel infected, or do if we perform minor exertion) - what happens when you have a germ, what doesn't happen is us is a temperature. We fail to mount a chronic fever, hence no on believes we have an infection. I should add the mini sepsis theory, which if you read up on this can happen even with fatal sepsis. In sepsis (full blown) the patient CAN fail to mount an increase in core temperature.

To me, the core 'feature' of ME CFS, is the lack of fever/increase in core temperature, that pre ME CFS, we used to have. To me that is a giveaway, a 'trait' of our disease. It doesn't mean we don't have an infection, it means we have an incorrect immune response, thus allowing the infection to propagate and hide, aided by the psych lobby who did the same thing by blaming our minds, on a 'belief' of an infection.

NB: Measure your NK Cells, T killer Cells, B Cells, (inc BAAF), Chemokines (same as in HIV), Cytokines, LDH (cell damage) IFN-g in severe ME, and you soon see a chronic infection - now exercise and see what it does, they go up - as they would, due to inflammatory response from infection. Some ME sufferers have muscle damage markers present also (Aldolase, Myoglobin). We are all denied these tests, because of how CFS is diagnosed, or should I say, planned to be diagnosed by people who denied chronic infection and needed you to have no evidence, so by using standard exclusion (not inclusion) derived tests, we have no proof we are infected because of our lack of:

Fever
Vomiting
Diarrhea
Sweating (Dysautonomia can cause lack of sweating!)


Ampligen is one such drug that can be used, in effect a sub optimal drug for cancer and HIV, that works for some with viruses, such as CFS, hardly surprising Ampligen can work, when you consider Toll Like Receptors (TLR) and CFS pathology and that Ampligen is basically synthetic RNA, and retroviruses are RNA viruses that reverse transcribe to infect you for life, (DNA infection). Thus theoretically, pumping yourself with uninfected RNA which the body thinks is real (Ampligen), may re-start your immune response. It would also thus work for other viral infections, and hey presto, people propose Ampligen for Ebola, so it has broad-spectrum antiviral effects.

So that was puzzling to me, when Ampligen helped PWCFS decades ago, but it only made sense once I found out that Elaine De Freitas and Holmes found RT in CFS patients in America (decades later) and Australia too (different ends of planet earth),but both with white people (race based infection obviously) and critically, vaccinated people mostly of the same genetic heritage too (Australian and American whites are from the same European stock). England, Scotland, Ireland - prisoners sent to Australia by English law makers when England basically ran the world by invading territory and seizing it.

It's thus rather obvious why CFS is so huge in prevalence with white people in:
UK, Auz, Nz, Europe, North America (US, Canada) - because they are mostly the same people, genetically. As if, of course: Germany, Holland, Norway, Denmark, Sweden, France etc - all of these 'white people' have similar genetic heritage, and critically, exposure to common vaccines, mix with each other sexually, and emigrated. Around the birth of vaccines, the disease 'ME' then turns up at different ends of the earth, by chance in the same racial heritage, but misses countries with little or no mass vaccine programs, misses countries with war (ME said to be stress induced by psychs) and misses Africa with no sanitary conditions, appalling levels of nutrition). Not possible in pysch disorder, but very possible if these people are linked, genetically. (I'm talking about severe ME, post 1970, and not Chronic Fatigue Fukuda).

I then discovered the MRC (UK) who did PACE hid knowledge that patients came down with ME post vaccination, the details are still redacted, because of the name of the vaccine that triggered ME, where it was, and what company produced it. (Vaccines don't have to be infected directly, via NFK-B cascade, they cause a huge inflammatory event, which to the body, is little different than having a serious infection). This 'stress' on the human body has the potential to activate latent retrovirus in children, as does a flood of androgens that happen at the time of puberty. Puberty is a common time for those who develop life long severe ME for it to 'turn on'. Puberty also means the patient is at School. School environment has a lot of immune suppressed people waking around, passing on infection (massively increasing your risk of contagious spread of pathogens). School teachers, kids at School and Nurses have a high reporting rate of ME - not stressed Bee Keepers out in the woods, and not Eskimo's seal hunters out on the ice. Everything about how one 'catches'; ME suggests: contagion, environmental, genetic - mixing tragically.

Naturally, the government exploited this mutli national disease exportation and twisted the story of ME into CFS in fatigue of unknown cause. Fatigue can then be a myth in the media about wealthy white women only, women actually have a much higher rate of autoimmune disease, but the public with CFS weren't aware of this and they also aren't aware that infection and autoimmunity development go hand in hand. Later on, psych's then (disgustingy) pretended 'ME' was massively more prevalent in ethnic minorities (absurd). They are actually talking about phoning ethnic minorities (like in CDC phone surveys) and asking if they suffer from Chronic Fatigue, this is NOT a Myalgic Encephalomyelitis is it or a medical diagnosis of a crippling chronic disease!

Conversely, find the severe ME patients, classic Ramsay ME, and they are almost always white people, and for a reason. Autoimmune diseases like MS, love red haired genetic Northern Hemisphere people (E.g Scotland and MS prevalence), and ME loves white northern Europeans too (some who genetically emigrated to Canada/US/Australia/Nz). All these people's parents were VACCINATED in these developed, Western Societies, in the same time frame (or came into air-borne contact with people who were), which of course, poor, uneducated impoverished non whites (who never have ME) and live in war zones or extreme poverty, weren't vaccinated!!!!!

In my view, this is ultimately why Ampligen and now Antiretrovirals are still considered taboo for CFS, because they validate the historic time frame viral nature of the disease, and make a mockery of the CDC (who created CFS as their own) and all allied nations (UK, USA) who copied this bonkers idea that people get CFS due to fear of activity, from beliefs in a virus.

I believe this is why we can't get treatment, because to treat ME for what it is, you must admit, that you CAUSED the epidemic of ME in the first place, and then spread it (by refusing to acknowledge it), by claiming it was biopsychosocial disorder based CF.

Anyways...
I know for a fact that you can detect these exogenous gene sequences in humans by:

Very Long culture (20-30 days)
Next Gen Sequencing

You can also indirectly prove a retroviruses in CFS/Autism/Lyme also by testing blood for Reverse transcriptase (RT), however this is pointless if:

*The assay cannot detect RT because the antibodies it detects are not calibrated to you infection.
*The amount of RT you express falls below the detection limit of the assay.
*The pathogen you have is not detected by the assay because it is in your tissue, e.g. brain and not in blood!

Thus if you have tested negative on RT (if you have ME CFS), because of the limitations of using a generalized RT assay, it does not rule out retroviral infection.


Look carefully in the next few years and watch the fusion of MS with CFS and also Autism.
ME/Chronic Lyme/FMS/POTS etc was vital to contain (through the ruse of CFS), because so many people are now disabled, far more than with HIV/AIDS and Cancer is out of control. Once these people are validated (which they will be), FMS, Autism and Chronic Lyme will follow as infection based autoimmune/autoinflammatory brain diseases, subtle, but still neurological.

Think what will happen when the CFS/FMS/Autism families/Chronic Lyme patients find out the trash therapy of CBT/GET/Antidepressants was always known to be a lie, and they always knew about the pathogens, hence they buried the details in the MRC files that fully show that psychs wrote to the UK government begging them not to accept ME, but to promote CFS as a sensible reaction to ME, and that CFS should be given disability payments, and ME should not.

To my relief, that day is coming, not be selecting 300 tired people and saying 3% have SFFV but by selecting people with non Lipkin disease (ME), who have huge Cytokine expression driving symptoms, and proving that by prescribing combination antiretroviral therapy, by proving multiple class HERV's are in these patients and many other pathogen (Dr Lipkin says he can't find any existing pathogens in CFS blood (bizarre) but De Meirleir and Montoya find tonnes of infection - correlating with decades of CFS biomedical research), the patients can get significantly better in some cases.

Then all financial hell will break loose and what a great day that will be. Financial hell for the people who put us in physical hell by not treating a torturous post infection event autoimmune, immunesupressive disease. A most deserved fitting end to the liars and cheats who stole our rights to:

Employment
Love and partnership
Having Children
Making friends
Leaving the house and seeing the outside world

All of the above is abuse of human rights. When medical agencies and allied 'researchers' are the cause of this, think how much money is going to change hands in 'out of court settlements' with literally thousands of hospitals being sued, who prescribed CBT/GET/Antidepressants, universally, to CFS patients - telling them all, these therapies were safe, evidence based, and would enable a return to life!!!!

Antiretrovirals, Antivirals, IV Antibiotics and other immune modulators, will actually allow a return to life for some. This is why even if I'm the last person to afford ARV's, I'll support people who are pioneering patients and risk everything (under close expert medical supervision) to try new drug therapies that may help them,and others in the future.

HIV/AIDS drugs are just one part of the puzzle to validating the many conditions within 'CFS' which will happen and never did (or could happen) with CBT/GET.

Shame we had to find out 30 years later when our lives are ruined, (some indefinitely as CFS can be fatal), but medical genocide tends to do this.
 
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Hip

Senior Member
Messages
17,866
Looks like this is a taboo topic? Nobody else, except @Countrygirl replied to this. I do not understand why this is considered a secret or kind of occult subject. If one has tried this treatment and worked why not to share with the others? Who is afraid of taliking about this and why? What should be hidden under carpet? To protect who?

It's not a taboo topic, but unfortunately one that seems to attract those who are opinionated, but at the same time who have little scientific knowledge, which then makes reasoned communication difficult. Worse still, the topic attracts those keen on conspiracy theories, which then makes the whole discussion risible.

If you have anything new to say that has not been discussed on this forum before, and is scientific, I am sure you will get a response.



I think that CFS and HIV resembles each other like two drops of water. What is different in CFS from HIV or vice-versa?

Are you not aware that ME/CFS by its symptoms closely resembles dozens of diseases, including lupus, anemia, hepatitis C infection, hypothyroidism, Lyme disease. But these diseases have completely different pathophysiologies to each other and to ME/CFS. So having similar symptoms does not imply a similar cause.

Thus the idea that because AIDS and ME/CFS have symptoms in common, they must share the same cause does not hold much water.



Let's not make things ridiculous on purpose by misrepresents words. Of course is not about HIV itself as we know today, HIV-1 or HIV-2 but it may be about a virus from the same family with HIV which is not known yet or not recognized officially. That's all, simple said.

What I think you mean is a virus from the retrovirus family (aka: Retroviridae); HIV is not a family of viruses, but a single species of virus.



The question is clearly broader than HIV and encompasses retroviral involvement in general. More to the point, as far as politics are concerned, I think the true issue is whether the scientific community is honest and objective enough to evaluate the existence and effects of its own unintended consequences.

If you are trying to suggest that there is scientific bias against the idea that ME/CFS might involve a retrovirus, you must have missed the entire XMRV story.

When the first XMRV paper was published, rather than being ignored, it was taken up with almost explosive rapidity by labs all around the world. In the UK, blood donation by ME/CFS patients was banned, due to concerns that they could be harboring a retrovirus. I have never seen such a worldwide rapid response to an (apparent) new scientific discovery.


Very sad as well, because although all this worldwide effort was rapidly dedicated to XMRV (which turned out to be a fiasco), so far, nobody has yet shown any interest in replicating Dr John Chia's groundbreaking discovery of enterovirus infection in the stomachs of most ME/CFS patients. Chia's paper was published over 10 years ago, yet nobody has taken any interest in replicating these remarkable results.

There have been very few brain autopsies on deceased ME/CFS patients, but the three brain autopsies I am aware of all showed enteroviral infection in the brain (but no such infection in healthy controls). And there is a whole history of research spanning decades which has found a strong association between ME/CFS and enterovirus.

Enterovirus makes much more sense as a cause for ME/CFS, because for one it is a respiratory virus, spread by ordinary social contact; whereas retroviruses are spread by blood contact, which usually means via sex (or sharing needles for street drug injection). Unlike AIDS, there is no link between unprotected sex and ME/CFS, which makes a retroviral etiology look unlikely.

It's not impossible that a retrovirus could be involved in ME/CFS; but I don't think this can be the actual triggering virus of ME/CFS, for reasons explained in the previous paragraph. But it is not inconceivable that some retrovirus might already be in the body, and then when you later catch an ME/CFS-associated virus such as EBV or enterovirus, this virus is not properly cleared up or controlled by the immune system, due to immunosuppression by the retrovirus.

However, you don't need a retrovirus to explain why EBV or enterovirus appear to trigger ME/CFS in some people, but not in most others: if you look at poliovirus, 90% of people who caught this virus (before the advent of the vaccine) showed no symptoms at all. The virus has no effect on 90%. But in 0.5% of cases, poliovirus causes paralysis, and out of those 0.5%, some will die from the virus.

Thus it is clear the same virus can have a wide range of effects in different people, from being completely asymptomatic to being fatal.


If you want to advocate for more research on viral etiologies of ME/CFS, I'd suggest focusing on enterovirus, which is a far stronger candidate for a cause of ME/CFS than any retrovirus.
 
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JES

Senior Member
Messages
1,323
Naturally, the government exploited this disease exportation and twisted the story of CFS to be about wealthy white women only. Later on, psych's then (hilariously) pretended 'ME' was massively more prevalent in ethnic minorities (total lie), they are talking about phoning ethnic minorities (like in CDC phone surveys - LMAO) and asking if they suffer from Chronic Fatigue, this is NOT a Myalgic Encephalomyelitis is it! Find the severe ME patients, classic Ramsay ME, and they are almost always white people, and for a reason. Autoimmune diseases like MS, love red haired genetic Northern Hemisphere people, and ME loves white northern Europeans (who emigrated to Canada/US/Australia/Nz). All these people's parents were VACCINATED in these developed, Western Societies, in the same time frame (or came into air-borne contact with people who were), which of course, poor, uneducated impoverished non whites (who never have ME) weren't!!!!!

Your post started interesting, but conclusions like above is why nobody can take this topic seriously. Even if ME/CFS was more common among white people (research actually shows CFS/ME is about equally common in places like Brazil and Nigeria as in UK (ref1 , ref2 ), it doesn't logically follow that CFS/ME is caused by vaccines. Disease prevalence tend to vary with ethnicity and even gender, it's common knowledge. Diabetes is 60% more common in black people, for example, and it doesn't need any conspiracy theory to explain the reason behind that.

Also it is well known that Vitamin D absorption from sunlight is much less in the regions with less sunlight, and low Vitamin D levels have been strongly associated with multiple autoimmune diseases.

Maybe if everyone took their tinfoil hats off for a moment, this topic could actually be worth keeping going.
 

Biarritz13

Senior Member
Messages
699
Location
France
Conversely, find the severe ME patients, classic Ramsay ME, and they are almost always white people, and for a reason. Autoimmune diseases like MS, love red haired genetic Northern Hemisphere people (E.g Scotland and MS prevalence), and ME loves white northern Europeans too (some who genetically emigrated to Canada/US/Australia/Nz). All these people's parents were VACCINATED in these developed, Western Societies, in the same time frame (or came into air-borne contact with people who were), which of course, poor, uneducated impoverished non whites (who never have ME) and live in war zones or extreme poverty, weren't vaccinated!!!!!

I don't know to which vaccine you refer to but do you know that people were vaccinated in Middle East (in Turkey, Syria and other countries I am sure) for at least 70 to 80 years?
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
It's actually good to discover we all have different conditions, because it will then prove that the previous figures of treatments worked far better than originally thought, as potentially the drugs that failed, were being used in the wrong subgroup. Treat the right subgroup, and suddenly you discover the infections and autoimmunity keeping patients sick, and can then use targeted therapy to get patients significantly better, not cured, but better function.

CFS1 -Chronic Viral
CFS2- Chronic Bacterial (Lyme)
CFS3 -Chronic Retroviral HERV
CFS4- Autoimmune non HERV
CFS5- Fatigue orientated CDC
CFS6- Post infectious behavioural disorder (F48.0).

ME and Chronic Lyme is one of the above subsets or a mixture of multiple subsets, but we need the right subset to know in the future that ARV's will work for this subset. And for that, we need more biomedical research for ALL subsets.

By shedding malignant BPS psychiatry, this is all possible, but governments love psychiatry as the public diagnosed with CFS are then always guilty until proven innocent. Who would benefit from that? Many companies and health agencies involved in causing these diseases to spread out of control.

Taking that on board, this is in conclusion why some are so terrified of the 'idea' that it's even possible that anyone with a diagnosis of CFS, could ever respond legitimately to ARV's (dumb I know).

I feel there is a fear among some with vested interest, than CFS could ever be biological based at all! We must overcome these people controlling us, by educating ourselves by finding evidence of inflammation and rejecting powerful government lobbyists who continually try to 'prove' to us, we have have no chronic inflammation.

And to do this, you need multiple Cytokine and Chemokine tests, and to test not just once, but 3, 4, 5 times to show consistent inflammatory response (also order an FBC/WBC to 'prove', ideally you didn't have a raging infection on the day of the test). In other words, a normal or high normal white blood cell count, with a very high Cytokine response, cannot be palmed off as ''ohh you must have had a cold on the day of the Cytokine test''.

Make sure you plan all this in advance, think ahead when ordering blood tests and order additional tests in which you predict skeptics would use against you, to de-validate your abnormal core tests. (FBC/WBC is one), as is ESR/CRP.

In ME, generally, you're looking for multiple high cytokines and chemokines (associated to glial cell activation) - worsened by exercise and activity, lack of sleep- that all stress the body...but... with a normal ESR/CRP, normal FBC/WBC. This way you demonstrate innate immune system activation (classic ME CFS) without acute phase reactants that would be 'up' with an infection that we all get from time to time when healthy.

If you're well enough, video record your adventure. Do a blood draw on an average day, and then follow a CBT/GET get program if you can, until you feel so awful you can't stand up. Then get a blood draw during a bad PEM/PER event. I've done this, and of course, the inflammation is higher, because the body is wrecked from mitochondrial burn out, more innate immune activation, stress from so much pain/lack of sleep. BUT, the government says this is in your mind and you don't need to stop, continue with your GET. (Fraud of course). Prove it with these tests if you can on a 'bad day', psychs say a bad day is the behavioral fear making you feel 'ill' that you fear exercise made you worse. The truth is, it's cytokine expression. I proved this by gently riding an exercise bike (this was years ago) and adhering to CBT/GET programme.
That's all saved, documented, and in time I will sue the hospital who told me, to continue and not listen to my body.
(They are so dumb they don't consider if they're wrong, and just like down the phone at you, so record their phone conversation (as they claiming GET is harmless) and just tell them (legitimately) you have terrible short term memory and do you mind if I record this, or just write some notes when in the doctors office, what they claim. Again, they are so dumb, they will hand you an A4 sheet of 'exercises for CFS'. Photocopy this and store it for when you sue them, as the'exercise for CFS' never was validated as safe, it was invented by psychiatrists who say ME is a myth. (Very dangerous in medical circles to do this and distribute this information to patients with no evidence base!).

Also remember autoimmune diseases can can cause things to go haywire, so with Lupus when ESR is up, CRP is down, or you may miss this and need to retest, because you thought you had Lupus or other autoimmunity and didn't. (always retest around 6-8 weeks after an abnormal inflammatory result involving ESR/CRP, to rule out an infection which should clear within 5-7 days). In ME, often the ESR is low or zero. As ESR is associated to inflammation, few doctors would believe you if you had zero ESR that you had terrible pain, but doctors don't test cytokines, because this is still 'new' to mainstream medicine and testing cytokines is not only expensive and difficult (can need freezing).

Something in ME causes this chronic cytokine expression (Oddly, Dr Lipkin's research saying inflammation is absent after 3 years) but this research is clearly not on ME patients but people who meet fatigue criteria). Conversely, Dr Montoya's patents were 85% infected with retrovirus and DO have high levels of Cytokine inflammation). Did we ever see Dr Montoya's cytokine test that was said to show severe vs mild CFS - also shown by Australian researchers? No, it was superceeded by Dr Lipkins absence of Cytokine response! after 3 years, nothing there, hmmm! What a strange turn of events. May 2014 Dr Montoya's Cytokine paper was due for release. Where is it?

Like other kids with ME (now rather older) I discovered that my whole family tested positive for Lyme and Chlamydia Pneumoniae, but that's just the start of it. No HERV tests are available yet, only on a research basis. Also to test for pathogens it's stupidly expensive, we need the 'lab on a chip' test to come out and test for 100 viruses at once, for $250 a go. That would sell...

Proving a retrovirus to warrant ARV use is obviously the holy grail, but realistically, we have to wait to see the research published first, and then wait for labs to see these pathogens are detectable and profitable. Sadly in medicine everything is about profit.

It's much more profitable not to cure cancer, and ironically, you can spread cancer by giving everyone low level chronic inflammation from HERV's via other pathogens activating HERV's and then tell them they're somatizers, depressed, or 'weird'.. That happened too.

None of these conditions below have a diagnostic test, but may all share common pathogens if on closer inspection we drop the 'behavioral' idea and focus on how brain inflammation alters behavior and sensory input, then factor in gene expression and environmental factors:

Alzheimer's
CFS
ME
Autism
ADHD
ADD
ODD
Depression
Fibromyalgia
Schizophrenia

And many more....many at increasing rates over the last 40+ years.

If there were marketable Retrovirus tests, all of these conditions could be tested, plus all people with existing neurological and immunological and neurological diseases.



The false story of XMRV, lit a burning wick to make patients think outside the box and not accept living like mushrooms (being kept in the dark and fed on BS). Always explore every logical avenue if you can, and research yourself ideas you have and see if they're at all plausible.

There are endless research papers here to search: http://www.ncbi.nlm.nih.gov/pubmed
Try and chose other conditions, other than CFS, that involve similar findings, and often there are your answers to link to your own condition, experimentally, and then if you find a link, research it further to see where it goes. Ignore fatigue, and focus on infection, inflammation, prions, neurology, autoimmunity, POTS, vascular, cardiovascular, respiratory, allergy etc and see the links.

It all ties in with the human body under siege from inflammation, and consequent organ dysfunction. The brain doesn't work in CFS. Try and find for yourself what's going wrong in your own body, by looking for brain inflammation markers (glial cell markers), if you have organic ME CFS, it'll come back positive and then you know you may have organic ME CFS. Do that with 20 different tests, and you know you likely have ME CFS, whatever that is.

Then get smart and remember the links you made with other conditions, and notice the alleged controversial CFS findings (that are rejected by the state) well they actually correlate biomarkers for HIV/AIDS, Lyme, and even signs of dementia (chronic low blood flow to the brain), autoimmunity, pituitary gland inflammation, or GH deficiency signs (brain injury).

Everything that is denied in CFS biomedical research, I tend to test positive for. Think what that means, there is an known biological disorder that causes ME. ME is real and will be proven within a few years to be why people with 'CFS', are so terribly ill and we have all been lied to, irrespective what subset you are.

The current CBT/GET idea is fraudulent, criminal and the people who push it will eventually be jailed for the biggest ever medical conspiracy to grace this planet. (Infecting tens of millions of people then blaming them, even if you kill 1% of ME CFS sufferers, means you kill at least a million people over decades). That's genocidal behavior.

If you get future treatment, you get well, if you get well, you can cope with stress, if you can cope with stress, you can sue them for preventing biomedical research on the basis of xenophobic, sexist, discrimination. CFS being claimed as a Women's disease (they know damn well autoimmune diseases affect many more women than men). By calling CFS a Women's disease, they invalidate men. Tonnes of men have CFS, maybe 5 million globally. They also then allow men, to believe Women with CFS must be hysterical and neurotic (also sexist) and thus haul in the somatization experts. This is entirely planned. ME CFS patients have no previous mental history prior to disease onset, and don't even suffer from depression at higher rates than MS, despite the appalling treatment they get. The biomedical defects in ME are also not reproducible by deconditioning (see VO2 max 2-day results the CDC won't allow to be part of a CFS screening tool), they want' 1-day VO2 max, that then allows for deconditioned fatigued people to claim your legitimacy, illegitimately. They know this.

If you sue CDC/NIH/HSS/NHS who run health policy you will get financial compensation for them ruining you life and you will validate your real struggle as something imposed on you against your will (being trapped inside your home with no treatment due to no treatment, no treatment based on assumption your symptoms are maintained by a mind-body ''circle'' (CDC Dr Unger's owns words regarding CFS), then you have been falsely imprisoned and need to be reimbursed financially, as stolen time cannot be replaced, tragically.

Now is not the time to give up, absolutely positively do not give up now. XMRV would never work out even if it was real, they will never, ever, allow global vaccine contamination to be validated. What they will allow is to say you have HERV's we don't know what causes this (Xenotropic retroviruses genes could do) and yea, well I guess you can have the drugs if you pay for it (what has just happened in MS in the UK after a successful ARV trial in MS, no one with MS in UK will get ARV's free from the state because of the cost and the possible cause). Same will happen with ME CFS, another neuroimmune disease, one of many that barely exist in 1950, and is now everywhere.

What happened in the 1950's? First global introduction of vaccines into Western developed civilization, vaccines made from mouse brains and other animal tissue. Animals believed then, impossible to transfer infections into humans using their cells in humans. Now we know cell lines CAN be contaminated, then the story has changed. Too late for the people injected, often who are us, or are our parents, or are the person who gave us blood donation (e.g. if we're pregnant women who bleed) who then have babies with Autism/CFS post blood transfusion with no Autism in the family. Lyme patients can donate blood by the way. Insane, but true.

It won't come out in the wash, but HERV autoimmunity in CFS will be proven by how patients respond to ARV's and others respond to more radical therapies (Chemotherapy drugs), that can't be taken long term and won't work in severely affected anyway if the bone marrow is infected and expression proteins that travel to the brain, inducing deranged prion proteins via the spleen/via bacterial translocation into the brain via the stomach.

Social media has been the undoing of psychiatry, patients network together and by talking openly about so many disabilities they have, they realise they aren't unique after all (often told this by doctors) but share identical or similar symptoms, who then share the same pathogens, or autoimmune diseases and that they never knew this, before talking to others online.

This is why psychiatry is terrified of educated intelligent CFS ME patients. Educated CFS ME patients, collectively expose scientific fraud and never stop until they find the answers why they are chronically ill, precisely what psychiatry cannot do, and never intends to do because their treatment is to blame your mind for keeping you sick (CBT/GET for ''fear of exercise''). That is of course nonsense, and a thing of parody.

in 2017 power will be initiated, gradually, to the side of normality. Power wrestled from a vice like grip, into more equal territory, slowly, but it is happening behind the scenes. All psychiatry can do is spread hatred in the media about non existing dangerous patients (akin to what dictators do to any opposing political force) and make the public view ME CFS patients as inferior mentally ill patients, unbalanced people who ''believe in a virus'' and irrationally reject empathic psychiatry. Consequently by state approved hatred (no one was ever reprimanded by their medical governing bodies), ME CFS patients are then seen as people not to be believed or have empathy shown towards because they are allegedly mentally twisted. This plot failed, and it failed because a ruse can never last for ever and through technology, Science advances, and sensible people listen to the patients, follow biomedical research and make advances in Science on behalf of it, and their patients.

Many ME CFS sufferers are ironically educated better than general medics, as general medicine has no biomedical training for doctors towards ME CFS pathology in medical school, not one course! This will change rapidly, it will become shameful for doctors to shrug and turn the other cheek, because they won't be allowed to ignore people with a disease that is life long, and not caused by the mind, but by infection and autoimmunity. Ignoring ME CFS will become as crazy as ignoring Parkinson's disease, which will likely share some mitochondrial pathology with ME CFS as if you look at mitochondria and Parkinson's brain pathology there are some interesting overlaps with ME CFS, e.g. both being a catastrophic lack of ATP (energy) in brain regions, differing of course.

So things are looking up, if taken on the huge sliding scale of decades. It'll still take years, but years is better than never.
Private researchers will change the face of ME CFS, positively, forever. The government agencies are still not researching and focusing on ME, but pointless ego boosting exercise in analyzing generic fatigue patients, who never need to display the signs of cardinal ME, who will never show a consistent gross finding, due to heterogeneity. So in there you won't find huge rates of retroviruses, Lyme or Autoimmunity - accidentally on purpose, otherwise they'd do the opposite.

As long as people donate to the OMF and other biomedical ME charities who funded cutting edge neuroimmunology and autoimmunity studies, we'll get there soon, and now I'm flying around the room with vertigo and don't really know where I am from using my brain so much, I will bid you all adieu.

http://www.openmedicinefoundation.org/
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Your post started interesting, but conclusions like above is why nobody can take this topic seriously. Even if ME/CFS was more common among white people (research actually shows CFS/ME is about equally common in places like Brazil and Nigeria as in UK (ref1 , ref2 ), it doesn't logically follow that CFS/ME is caused by vaccines. Disease prevalence tend to vary with ethnicity and even gender, it's common knowledge. Diabetes is 60% more common in black people, for example, and it doesn't need any conspiracy theory to explain the reason behind that.

Also it is well known that Vitamin D absorption from sunlight is much less in the regions with less sunlight, and low Vitamin D levels have been strongly associated with multiple autoimmune diseases.

Maybe if everyone took their tinfoil hats off for a moment, this topic could actually be worth keeping going.

I'm taken seriously but I doubt you will be if you believe numbers of ME in the USA/UK/CANADA and other allied countries (Australia) are the same as in Brazil and Nigeria.

That is seriously the oddest thing I've ever heard regarding ME epidemiology.

Ask anyone on this forum if they think Myalgic Encephalomyelitis in Nigeria is at the same statistical level as in the UK, the birthplace of ME (Royal Free Hospital) from contaminated vaccines given to nurses and doctors. Also outbreaks in San Francisco, USA, and others.

In all historical documentation on ME (CFS/ME doesn't exist and isn't allowed to exist BTW as dual coding is prohibited by the World Health Organisation), South America and Africa is never mentioned.

I imagine you have been mislead, and are reading a psych lobby paper, that uses FATIGUE (phone survey), or Fukuda CFS (or worse) generic fatigue respondents to questionnaires and the 'researchers' call this CFS/ME and then ME.
We had last year or so, and absurd level of 'CFS', proposed by I think Crawley et al, or Chalder? Some ridiculous level, but when you read the paper, these are estimates based on FATIGUE. So no science, just guess work, which they do on purpose to try and make ME look like a common disorder.. ME is not a common disorder, psychological fatigue is though. And fatigue itself, likely accounts for around 80% of what doctors hear in their offices, again, that's not ME.

What criteria are these patients in Brazil and Nigeria? Psychiatrists and CDC like questionnaires, questionnaires aren't medicine or science, but psudeo science used for political purposes to deny ME.

Lets see if this idea of yours stands up to scrutiny that impoverished countries have the same levels of ME as developed Western countries, (As recently promoted by the Wessely school for F48.0 CFS), or it might be seen a conspiracy theory that you've unintentionally been tricked by.
 

Hip

Senior Member
Messages
17,866
Ask anyone on this forum if they think Myalgic Encephalomyelitis in Nigeria is at the same statistical level as in the UK, the birthplace of ME (Royal Free Hospital) from contaminated vaccines given to nurses and doctors.

The opinion of people on this forum is irrelevant if it is not based on empirical data.

But a quick Google search reveals that the prevalence of ME/CFS in Nigeria is 0.68%, compared to 0.422% in the US. Ref: here.


As for this wild speculation about contaminated vaccines causing ME/CFS, which is not backed up by any evidence, this is just another example of the sort of kooky ideas that appear on these threads about retroviruses. I am not sure why retrovirus discussions attract such kookiness.

If there is any connection between vaccines and autoimmune diseases, according to Dr Yehuda Shoenfeld, it is the adjuvant that may be responsible.
 
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barbc56

Senior Member
Messages
3,657
(research actually shows CFS/ME is about equally common in places like Brazil and Nigeria as in UK (ref1 , ref2 ), it doesn't logically follow that CFS/ME is caused by vaccines

To elaborate on what JES said, this could also be compared with aids. How do you explain the fact that the countries with the most prevalent number of people with aids in sub sahara Africa, yet these are the same countries with the lowest vaccination rates?
Sub-Saharan Africa has the most serious HIV and AIDS epidemic in the world. In 2013, an estimated 24.7 million people were living with HIV, accounting for 71% of the global total. In the same year, there were an estimated 1.5 million new HIV infections and 1.1 million AIDS-related deaths
https://www.avert.org/global-hiv-and-aids-statistics
Lowest vaccination rates:
Equatorial Guinea51%
Vanuatu52%
Guinea58
Nigeria42%
Somalia46%
Central African Republic49%
http://www.bbc.com/news/health-24519949

These are facts. Not opinions, conjecture or conspiracy theories.

Aids is a retrovirus. Is it also caused by vaccines? Is aids the exception to the rule or is this another coverup by WHO?
 
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Countrygirl

Senior Member
Messages
5,473
Location
UK
This response by Dr Willy Weir to the NIH is relevant to this thread:

https://www.nih.gov/sites/default/f.../rfi-healthcare-professionals-researchers.pdf

Weir, William RC, FRCP FRCP (Edin). […] Subject: Successful treatment of ME/CFS with antiretroviral I am an infectious disease physician with an interest in ME/CFS. I am retired from the UK National Health Service now but retain my interest in ME/CFS and continue to see and treat patients with this condition. I wish to report some preliminary observations. I have prescribed the antiretroviral, tenofovir, in the treatment of ME/CFS. I have three patients with ME/CFS who recovered whilst being given this drug. Signs of recovery did not appear until the third/fourth month. Two of them had IRIS like features during the first three months of treatment reminiscent of what I have seen in the treatment of HIV infection. I have also had to stop the tenofovir in 3 other patients in whom there was no beneficial response after 5 months. One of these was also having severe IRIS like symptoms and felt unable to carry on with the drug. In the recovered patients, I think placebo response was an unlikely explanation insofar as there was no 4 beneficial effect until the 3rd/4th month. The occurrence of IRIS in two of them is highly suggestive to me of successful treatment of an immune-suppressing retrovirus. Could this be a HERV? I now have 6 other patients on tenofovir, but all are within 3 months of starting the drug, and I do not expect any beneficial effects as yet. I intend to report on these when they have completed 4 months of treatment. Of interest is that the apparent beneficial effects in Rituximab treated patients took a minimum of 16 weeks to appear. With the benefit of some (informed) guesswork I think that a retrovirus is the root cause of ME/CFS and that its preferred residence are CD20 cells, just as the preferred residence of HIV are CD4 cells. I am very excited by the response of the patients I have described and feel very strongly that a full double blind, randomised, controlled trial with close monitoring of immunological parameters is now warranted using antiretroviral therapy. As I am now retired I am not in a position to organise this but would be very happy to provide input based on my experience of seeing approximately 2,000 patients with ME/CFS.
 

asleep

Senior Member
Messages
184
As for this wild speculation about contaminated vaccines causing ME/CFS, which is not backed up by any evidence, this is just another example of the sort of kooky ideas that appear on these threads about retroviruses. I am not sure why retrovirus discussions attract such kookiness.

Poisoning the well much? And for the record, the proper term amongst the scientifically literate is "hypothesis" not "wild speculation." Furthermore one does not have to prove a hypothesis before making it. That really would be kooky to insist upon that!

The contamination hypothesis is simple and does have evidence to support it.

Hypothesis: The culturing techniques used to manufacture various vaccinations have provided a rich environment for the generation of numerous novel retroviruses that have entered the population through the vaccines themselves.

This paper (http://forums.phoenixrising.me/inde...ng-prexmrv-1-and-prexmrv-2.26522/#post-404684) demonstrates how quickly and readily these processes can produce replication-competent retroviruses (RCRs). This alone shows plausibility, likelihood, and mechanism of contamination. The fact that these same proviral sequences produced distinct, novel RCRs twice (first VP62, again in this paper) shows how easily this occurs.

Historically there has been no rigorous screening in the manufacturing process that would systematically detect and/or eliminate such retroviral contaminants. Virologists (purportedly) weren't even aware of how extensively this contamination was occuring in their own labs until recently.

This hypothesis is consistent with the entire epidemiological picture. The batch-based nature of this contamination could lead to geographical and/or temporal clustering, as well as variability in presentation (due to differing but related recombinants). The retroviruses alone could lead to subclinical and/or gradual-onset disease as well as spread through familial or intimate relationships. Acute cofactors that trigger retroviral replication (eg enteroviruses, ebv, etc) through immune system stimulation could explain outbreaks as well as rapid onset.

Additional evidence includes: Lipkin's (arbitrarily discarded) finding of retroviral evidence in 80% of samples in his microbe study; variants found such as JHK virus; cytokine and immune system abberations consistent with retroviral infection; some success through (untargeted) ARV treatment.

There are numerous ways to investigate this hypothesis objectively, none of which have been done. Furthermore, while it is falsifiable, it cannot be falsified by arbitrarily constraining the hypothesis to a single sequence/batch/manufacturer/vaccine.

This is what I was alluding to when I questioned the ability of the scientific community to honestly investigate and evaluate their own unintended consequences, particularly with respect to the most sacred of cows.
 

JES

Senior Member
Messages
1,323
This hypothesis is consistent with the entire epidemiological picture. The batch-based nature of this contamination could lead to geographical and/or temporal clustering, as well as variability in presentation (due to differing but related recombinants). The retroviruses alone could lead to subclinical and/or gradual-onset disease as well as spread through familial or intimate relationships. Acute cofactors that trigger retroviral replication (eg enteroviruses, ebv, etc) through immune system stimulation could explain outbreaks as well as rapid onset.

It's an interesting theory, but I wonder if contaminated vaccines were really the root cause behind CFS/ME, wouldn't science have established this causative relationship by now? If this retrovirus were the driving factor behind CFS/ME, one would think that at least a subset of patients would start to feel symptoms pretty soon after the vaccine had been given (at least those patients that already have co-infections). I don't believe this kind of reaction to a vaccine could happen without it becoming public knowledge.

To give an example, in 2009 a Vaccine called Pandemrix was introduced to Europe in order to treat the swine flu outbreak. Hundreds of thousands of people quickly got vaccinated in my country (Finland). Unfortunately, it turned out that this vaccine had a rare side effect, which would trigger narcolepsy in children with a certain genetic mutation. The occurrence of this was minimal (3.6 per 100 000), nevertheless, an investigation was launched by Finnish authorities and the link was established.

Based on above, if something like severe CFS/ME was triggered by vaccines in my country, and assuming that it's not as rare as the narcolepsy case above, I have little doubt that it would be public knowledge by now. Even if science was reluctant to investigate this, there would have been reports in newspapers about a subset of vaccinated people becoming sick with CFS/ME, just like there was in this much rarer narcolepsy case.

This response by Dr Willy Weir to the NIH is relevant to this thread:

https://www.nih.gov/sites/default/f.../rfi-healthcare-professionals-researchers.pdf

This is potentially an interesting finding. Though it could be that the antiretroviral medication is acting on any number of viruses. As we know, a subset of people with CFS/ME also improve from anti-enterovirus (Equilibrant) and anti-herpesvirus (Valtrex/Famvir/Valcyte) drugs.
 

perrier

Senior Member
Messages
1,254
Enterovirus is of interest to me. Dr Chia found positive results in a biopsy. But from what I understand, there is no drug to address enterovirus. Is this true?
Equilibrant doesn't work on everyone, and works better on men, I have been told, and not always.
 

Hip

Senior Member
Messages
17,866
Historically there has been no rigorous screening in the manufacturing process that would systematically detect and/or eliminate such retroviral contaminants.

Can you explain why you are only focusing on retroviruses? Is it because when government sponsored TV adverts warning about AIDS first appeared in the late 1980s, they created a sense of dread about retroviruses — a strong fear that has lodged in the collective psyche?

Why not other types of virus? The only virus I am aware of that passed from animals to humans through vaccines is SV40, which is a polyomavirus, not a retrovirus. If you look at this list of pathogens that are associated with various chronic diseases, there are very few retroviruses in that list. You find lots of herpes family viruses in that list, lots of enteroviruses, parvovirus, and various bacteria; but very few retroviruses.

And if it is a retrovirus you are focusing on (or fearful about), why should it have been transmitted via vaccines? Why not transmitted via contact with animals, as HIV is thought to have crossed into humans? Or why not a retrovirus that has been present in the human species for many millennia, such as the HTLV retrovirus?



If this retrovirus were the driving factor behind CFS/ME, one would think that at least a subset of patients would start to feel symptoms pretty soon after the vaccine had been given (at least those patients that already have co-infections).

Indeed.

In any case, if there were a retrovirus involved in ME/CFS etiology, the first thing to do would be to find that in ME/CFS patients. Later you can worry about where that retrovirus came from.



This hypothesis is consistent with the entire epidemiological picture. The batch-based nature of this contamination could lead to geographical and/or temporal clustering, as well as variability in presentation (due to differing but related recombinants).

Not really, because for adults who develop ME/CFS in outbreaks of ME/CFS, because people move around, these adults would likely have grown up in a different part of the county, so where they were vaccinated as a child would have likely been a completely different geographic location to the outbreak; and furthermore, adults of different ages would have been vaccinated in different years or decades. So there would be no batch of vaccine common to those who develop ME/CFS in an outbreak.



Additional evidence includes: Lipkin's (arbitrarily discarded) finding of retroviral evidence in 80% of samples in his microbe study; variants found such as JHK virus;

Not discarded, but treated with caution, perhaps in part in case it generates another wave of retrovirus religious fervor in the ME/CFS community, like the high emotions surrounding the XMRV story. And as we know with previous retrovirus discoveries in ME/CFS patients, the initial findings may not pan out when further research is performed.

In any case, it is very hard to prove that a given virus or microbe causes a given disease, even when that microbe is found much more frequently in patients with the disease. For example, research into the possible role of mammary tumor viruses (which are retroviruses) in the triggering of breast cancer began 100 years ago, yet even after a century, we still do not know for sure whether these viruses can cause breast cancer in humans.
 
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