• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Can be CFS caused by a HIV-like infection?

Messages
37
Location
Europe
I wrote them if there's any chance I can take this test. I am based in Europe but I will travel to NY if I need to. Its a pitty I don't see initiatives like this in Europe.
 

Hip

Senior Member
Messages
17,874
I wrote them if there's any chance I can take this test. I am based in Europe but I will travel to NY if I need to. Its a pitty I don't see initiatives like this in Europe.

You will find quite a few high-throughput sequencing facilities scattered throughout Europe, in university and other research departments. I know there are several facilities just in the UK. Though they may not necessarily be geared up to processing viral genetics.

If you want to Google search, then note these synonyms are used:

high-throughput sequencing = next-generation sequencing = massively parallel sequencing.

More info: Massive parallel sequencing - Wikipedia

But again I am not aware of any commercialized facilities that the general public and doctors can routinely use for clinical purposes. They seem to be all for research purposes.

There are commercialized high-throughput sequencing facilities for testing stool samples though: uBiome.com uses high-throughput sequencing to detect all the bacterial species you have in your gut, and they charge $89 at the moment (I expect the price will drop in the coming years).



Note: Dr Lipkin told me that high-throughput sequencing is not able to detect chronic enterovirus infections in the body. The studies of Dr Chia have shown chronic enterovirus infections in the stomach tissues of 82% of ME/CFS patients, and the British research on ME/CFS found enterovirus in the muscles of ME/CFS patients.

Dr Lipkin said these chronic enterovirus infections in the tissues would not be detected by high-throughput sequencing on blood samples (but if you were to take a tissue biopsy sample of the stomach or muscle tissues, and run your high-throughput sequencing on that, then it would be able to detect the presence of enterovirus infections in those tissues samples).

So the idea of high-throughput sequencing techniques being able to detect all viruses is not quite true; it cannot detect chronic low level enterovirus infections that are largely confined to in the tissues, unless a sample of the infected tissue it used.
 
Last edited:

sorin

Senior Member
Messages
345
High throughput sequencing — used by Dr Ian Lipkin in his study on ME/CFS patients (where he found retroviral infections in 85% of ME/CFS patients, incidentally).

The article mentioned above has this fragment inside

They also found retroviruses in 85% of the sample pools. However, Lipkin expressed caution:
“It is very difficult at this point to know whether or not this is clinically significant. And given the previous experience with retroviruses in Chronic Fatigue, I am going to be very clear in telling you – although I am reporting this at present – in Professor Montoya’s samples neither he nor we have concluded that there is a relationship to disease …if I were to place bets and speculate, I would say that this is not going to pan out.”


What means Dr. Lipkin by this "“It is very difficult at this point to know whether or not this is clinically significant."? He found 85% of samples having HIV like viruses and he says is "difficult to know if it is significant"?! How comes?


Was Dr. Lipkin able to tell what specific retroviruses were detected or just found that there are present in general, retroviruses?
Then why antivirals are not prescribed for CFS patients from the beginning?
 
Last edited:

sorin

Senior Member
Messages
345
well, i was totally fine until i kissed someone who was ill. have heard the same story many times from others. in some cases, entire families have CFS.
This is very, very bad if CFS is contagious. However, my feeling is that people with different conditions and different diseases are by mistake, at the present, nominated under the same "CFS" term. CFS seems to be the label that is put to the remnant, i.e what remains unidentified, un-diagnosed, unknown.
 

Hip

Senior Member
Messages
17,874
Then why antivirals are not prescribed for CFS patients from the beginning?

I guess because first you would have to identify, isolate and characterize these retroviruses that Dr Lipkin found, which I don't think is easy. And as Lipkin says, these retroviruses may not be playing any role in ME/CFS anyway:
“It is very difficult at this point to know whether or not this is clinically significant. And given the previous experience with retroviruses in Chronic Fatigue, I am going to be very clear in telling you – although I am reporting this at present – in Professor Montoya’s samples neither he nor we have concluded that there is a relationship to disease …if I were to place bets and speculate, I would say that this is not going to pan out.”
— Dr Lipkin

Then you would have to figure out which existing drugs might have an antiviral effect against these new retroviruses, or develop new drugs that target these viruses. There are plenty of people with ME/CFS taking anti-retroviral drugs for a HIV infection, who have shown no improvement in ME/CFS symptoms.
 

sorin

Senior Member
Messages
345
The studies of Dr Chia have shown chronic enterovirus infections in the stomach tissues of 82% of ME/CFS patients, and the British research on ME/CFS found enterovirus in the muscles of ME/CFS patients.
.
Ok, then, again Why there is no medication for enterovirus infections given to CFS patients? Why there is no action? Waiting for what?
 

Hip

Senior Member
Messages
17,874
Ok, then, again Why there is no medication for enterovirus infections given to CFS patients? Why there is no action? Waiting for what?

I agree with you. There is significant evidence linking enterovirus with ME/CFS, but nobody has shown much interest in developing anti-enterovirus drugs. Though I understand Dr Chia is working with pharmaceutical companies to try to get them to develop some anti-enterovirals.

In fact it would be better to develop an enterovirus vaccine (and this is very feasible); a vaccine of course would not help those who already have enterovirus-associated ME/CFS, but it would likely prevent new cases of such ME/CFS.
 

sorin

Senior Member
Messages
345
House of Numbers = BS

That documentary was created by Aids denialists and shouldn't be taking seriously. For the scientific evidence on HIV as the virus causing AIDS please refer to https://www.aidstruth.org/
The question "was ever HIV isolated and photographed on microscope? " still remains. See how people who pretended to discover this virus avoid to give an answer. That was my impression looking at this documentary.
 

Hip

Senior Member
Messages
17,874
The question "was ever HIV isolated and photographed on microscope? " still remains. See how people who pretended to discover this virus avoid to give an answer. That was my impression looking at this documentary.

You seem to keep jumping from science to nauseating pseudoscience. Are you also one of these people who don't believe that man landed on the Moon?

Little task for you: go and search Google Images for: HIV electron micrograph.
 

sorin

Senior Member
Messages
345
You seem to keep jumping from science to nauseating pseudoscience. Are you also one of these people who don't believe that man landed on the Moon?

Little task for you: go and search Google Images for: HIV electron micrograph.
You have to take critically whatever others (sometimes they call themselves "specialists") give you as evidence.
For example, in Mathematics there are theorems whose proofs are understood just by a few people (5-10) in the whole world. The others are just questioning it. Would you be tempted to believe those proofs just because whatever Professor from whatever University tells are true? I am not working in medicine so I can not judge if that specific micrograph is true or just a fake collage, maybe it is true, I do not know, but when Professors from top US universities questions it, may I also doubt it?
 
Last edited:

Hip

Senior Member
Messages
17,874
Critical appraisal and scientific skepticism of the evidence, even that given by experts, is a good thing. But you are not doing that. You are instead suggesting conspiracy theories, where laboratories or universities around the world have all colluded to produce fake electron micrograph photographs of the HIV virus; and presumably you also think that labs which do viral genome sequencing have also colluded to create fake genome data for HIV; and those people studying the evolution of the HIV genome over time are also colluding to produce fake evolutionary gene mutations.

If you spent some years slowing learning more about biology and medicine, you would be better able to distinguish science from pseudoscience/conspiracy theory. Many people on this forum, myself included, knew little about biology and medicine when they first developed ME/CFS, but started picking up this information slowly, in the process of trying to understand and tackle this disease.

So acquiring a bit more medical knowledge might help you separate science from nonsense, and help you understand what are reliable sources. "House of Numbers" is not a reliable source; it's full of people pumping out pseudoscience, as well as scientists quoted out of context.
 
Last edited:

Hip

Senior Member
Messages
17,874
@Hip ...what retroviruses has lipkin found?

I am not sure if the retrovirus results of the Lipkin and Hornig study have been published. They were just informally made public in 2013.

Lipkin and Hornig did later publish this paper in 2015 deriving from their study, which focused on the cytokine findings; no mention of viruses of any type in the abstract; it might mention them perhaps in the full paper (but I have not got access to that). Or there may be another paper coming shortly with more details of the viruses. But they already said they did not find much evidence of viral infection using their detection methods.
 

Hip

Senior Member
Messages
17,874
@Hip..was it a real retrovirus or just parts of them like they find in many diseases?

The only info on this seems to be what Lipkin said at a conference, which was quoted above.

By "parts of a retrovirus," do you mean HERVs (human endogenous retroviruses)? I don't think Lipkin was referring to HERVs.
 
Last edited:

Daffodil

Senior Member
Messages
5,875
@Hip ...ohhh yes ok i remember now..fragments ...like they find in so many other diseases...but nothing ever comes of it...

i actually have a friend who had his blood tested for some HERVs at Huber's lab but it was negative. it may have been HERV-K18 or something

xox
 

Hip

Senior Member
Messages
17,874
@Daffodil
ME/CFS patients test negative for HERVs in the blood, but they test positive for HERVs in tissue samples taken from the gut (Dr De Meirleir discovered this in his study). Ref: 1
 

Daffodil

Senior Member
Messages
5,875
@Daffodil
ME/CFS patients test negative for HERVs in the blood, but they test positive for HERVs in tissue samples taken from the gut (Dr De Meirleir discovered this in his study). Ref: 1
yes...that is why my doctor said that the viread must be acting on the HERV