Dr Patterson on Long Haul Covid vs ME/CFS

Pyrrhus

Senior Member
Messages
3,836
Likes
11,501
Location
U.S., Earth
What do you think about this treatment for viral debris?
The only way viral debris can exist in the body is if the virus is still there.

Once the virus is cleared from the body, any viral debris is quickly cleaned up by the cell.

When you see researchers saying that there is still "viral debris", it is either a very diplomatic or very stupid way of ignoring the persistent virus.

Maraviroc, however, is an odd choice I can't completely fathom. I guess it's because your CCL5 are elevated. But correlation doesn't mean causality. Maybe the CCL5 would be helpful and it's just the CCR5 of the T lymphocytes that don't get the message.
I would say it is a stupid choice. In serious acute COVID, people have suggested Maraviroc for its anti-inflammatory effect, which may indeed be a rational use of Maraviroc. But not in Long COVID.

Some people of Germanic descent (like myself) have a mutation in the CCR5 gene which means that our T cells are lacking CCR5 receptors. In the past, people said that we are lucky, since this mutation protects us from HIV infection. The problem, however, is that it makes us more vulnerable to other infections.

A SARS-CoV-2 infection (symptomatic or not) can trigger EBV and other viral reactivations
This is why I like to call herpesviruses "Me Too!" viruses. They like to reactivate when they sense another infection is occurring.

Although most viruses are too small to be seen under the microscope, herpesviruses are large enough to be seen under the microscope. So, if someone has symptoms of a viral infection, a pathologist may look at their blood under the microscope and only see herpesviruses. Then they might conclude that the cause of the patient's symptoms is a herpesvirus. :headslap:

They don't intentionally remove it from an existing group. It's just how the medical system works. The black and white thinking. Positive viral serology prevents CFS/ME from even being considered or diagnosed.
The original case definitions for "Chronic Fatigue Syndrome" were exclusionary criteria. This meant that a patient could only be diagnosed with "Chronic Fatigue Syndrome" after the doctor had excluded any other possible explanation, including viral infections.

I´m a covid long hauler too. I have followed Dr Patterson and Dr Yo for months. I think they are better at making a social media hype than being doctors to be honest. They have had "a paper coming out next week" for six months now.
Good to see you, @RobeAnJa !
I think you may be right here.
 
Messages
253
Likes
496
It's unfortunate that they simply remove any positive viral infections from CFS/ME groups and in the same breath, they claim that CFS/ME can not be viral because they can not find positive serology in CFS/ME patients.
No wonder when they remove all positively-tested ones from the enrollment in primary care. What's left then are the difficult ones.
"what the actual f*ck" to them removing viral results and then claiming they can't find any viruses????
Positive viral serology prevents CFS/ME from even being considered or diagnosed. CFS/ME diagnosis prevents a proper latent viral diagnosis and a complete review of all infections, because some studies claim that there is no association. But this lack of association is based on the first issue, the exclusion of CFS/ME by positive viral diagnosis in primary care, so they aren't even considered to be
Omg. More people need to know about this. Can you tell me how you know this? Do you think it's true in many countries? So... I don't get the timing thing here. ME is diagnosed if the certain symptoms go on past 6 months. I don't know when the 6 month part of the diagnosis was added. My understanding is was not always that way. So people would go into studies only past 6 months right? Unless you mean also from further back when there wasn't a 6 month part of diagnostic criteria (when was that?).

So if people have viral serology after 6 months of onset then they don't go into studies? How common is testing for viruses when a person reports that their symptoms came on months ago or that they haven't had acute infection symptoms in a while? I'm just not understanding the timing and specifics of what you're talking about. But it seems really crucial to me. Like potentially some gigantic flaw that many people with ME, and doctors, and researchers aren't aware of.

ah I see! So if they find a virus they say it’s due to the virus and therefore can’t be ME
On the clinic end from doctors, is this what happens sometimes? I mean besides mono are there any actual long infectious periods that doctors typically have a diagnosis for? Then it would go to ME typically I would think? If they have awareness and if they've actually tested for non ebv viruses. Both I would think rare but I don't know if doctors routinely check for non ebv viruses after months? (I'm just asking this aloud for whoever might have insight)

How often are people really having their blood drawn for viruses after a couple months or several months after symptom onset, from typical doctors?
 
Messages
253
Likes
496
Although most viruses are too small to be seen under the microscope, herpesviruses are large enough to be seen under the microscope. So, if someone has symptoms of a viral infection, a pathologist may look at their blood under the microscope and only see herpesviruses. Then they might conclude that the cause of the patient's symptoms is a herpesvirus. :headslap:
That is actually very significant. What level of awareness do you think there is about this among pathologists, doctors, and researchers of viral infections or of ME?
 
Messages
253
Likes
496
The original case definitions for "Chronic Fatigue Syndrome" were exclusionary criteria. This meant that a patient could only be diagnosed with "Chronic Fatigue Syndrome" after the doctor had excluded any other possible explanation, including viral infections.
This answered some of my questions. I didn't read the full thread before posting. This has changed right? At least somewhat? With official criteria or in real life practice, is virus detection leading to exclusion of ME still?

My question still remains about how often non ebv viruses are tested for anyway when it's months after symptoms started. I would think it is not common among typical doctors. We know that doctors specializing in ME who are part of the clinician coalition and possibly the IACFSME are testing their patients for viral infection as part of the ME disease instead of excluding it.
 

xebex

Senior Member
Messages
678
Likes
1,319
My doctor knows I have EBV and CMV but doesn’t understand that they could be reactivating or latent and contributing to my health. So I don’t really get this theory, not once has he ever said “oh you have post viral fatigue from EBV or cmv here’s some antivirals! Even my ME “specialist” wouldn’ t give me antivirals after seeing I had an active CMV result. Sigh.

From what I gather most doctors (GPS atleast) dismiss that these “harmless” herpes viruses could be causing such severe ill health.
 

heapsreal

iherb 10% discount code OPA989,
Messages
9,620
Likes
9,618
Location
australia (brisbane)
My doctor knows I have EBV and CMV but doesn’t understand that they could be reactivating or latent and contributing to my health. So I don’t really get this theory, not once has he ever said “oh you have post viral fatigue from EBV or cmv here’s some antivirals! Even my ME “specialist” wouldn’ t give me antivirals after seeing I had an active CMV result. Sigh.

From what I gather most doctors (GPS atleast) dismiss that these “harmless” herpes viruses could be causing such severe ill health.
They probably get in trouble from higher powers like their registration body etc.
 

xebex

Senior Member
Messages
678
Likes
1,319
They probably get in trouble from higher powers like their registration body etc.
Possibly yes, especially In The UK but I’m in Canada and he has prescribed me several things off label with no evidence, but the evidence I did have of the CMV apparently is not enough. So weird.
 

nerd

Senior Member
Messages
863
Likes
2,516
Omg. More people need to know about this. Can you tell me how you know this?
My insurance doesn't restrict me from seeing new physicians, so I've talked with many physicians in Germany. 90% match the typical stereotype. The stereotype doctors from the FLCCC also "mock".

Do you think it's true in many countries?
The medical system works very similar in most countries. The reason for this is that underdeveloped countries usually just adapt the laws from developed countries because this is the best way for the industry to accept their laws and attract financial investors. This is the reason why more and more countries implement very strict pharmaceutical laws so that you need even permission from a physician to take harmless medications just because it's only approved for a less common disease. And you'll never get it prescribed because it's not in the guidelines. So it's probably true for most countries with international trade partnerships. To get trade partnerships with the EU or US, you have to adapt their "standards".

ME is diagnosed if the certain symptoms go on past 6 months. I don't know when the 6 month part of the diagnosis was added. My understanding is was not always that way. So people would go into studies only past 6 months right? Unless you mean also from further back when there wasn't a 6 month part of diagnostic criteria (when was that?).
Only if you're still an unresolved case. This is just the medical system and how it works. When someone has positive viral serology, no time will be "wasted" for further diagnosis. They will be diagnosed with the viral infection, they will get full immunological treatment. There are so many options that they will go through, many of which would likely work for CFS/ME as well, such as interferon therapy, lymphocyte transfusions or filtration, all kinds of antivirals. If nothing of this should help, they will label it "chronic treatment-resistant viral infection" and with this diagnosis, all the doors will open for a patient. No need to even consider CFS/ME from the perspective of the patient. They have a virus and this is serious. CFS/ME isn't serious, right?

So if people have viral serology after 6 months of onset then they don't go into studies?
They go into antiviral therapy studies.

How common is testing for viruses when a person reports that their symptoms came on months ago or that they haven't had acute infection symptoms in a while?
Testing is still common, but they won't count the months prior. The day of the diagnosis is what counts. Regardless, a prior infection will not turn out with positive IgM and without positive IgM there is no acute infection and without an acute infection, the viral infection will be excluded as a diagnosis. "You don't have a viral infection", they will tell you. No need to look for latent or abortive infections since most physicians don't even know this exists, not to speak of its diagnosis.

I mean besides mono are there any actual long infectious periods that doctors typically have a diagnosis for?
These exist. But they are diagnosed by ongoing infection markers. For EBV, it's called CAEBV (chronic active EBV). But this isn't the case for CFS/ME. It's not chronic active. It's chronic latent or whatever, and it might reactivate regularly but not show up in the late IgM antibodies because this kind of testing only works for the first initial infection. They won't look in the CSF on a regular basis either, in case there is something reactivating in the CSF or any other organ.

Can you elaborate on your thinking about nothing excluding ME?
Let's take another example, namely pre-diabetes and diabetes mellitus. Technically, diabetes mellitus includes the pre-diabetes diagnosis because it's just an advanced stage of the same disease. But you won't be diagnosed with pre-diabetes if you are diagnosed with diabetes mellitus. It's only the black and white thinking of medicine that you need exactly one diagnosis and everything else is just a distraction. So once you're cured of diabetes mellitus, you might still have pre-diabetes.

The symptomatic definition of diseases allows many overlaps. CFS/ME is an unspecific condition, so it overlaps with many diseases. It's just the black and white thinking of medicine that this isn't co-diagnosed, e.g. for long haulers who have it more than 6 months. If there was a causal-pathological definition of diseases, you'd really only have a single diagnosis given a single causality.

Both I would think rare but I don't know if doctors routinely check for non ebv viruses after months?
They might, out of pure lack of knowledge of the disease, re-check for it by late IgM antibodies, which can never come back positive if you don't have a severe immune deficiency. They might not recheck at all because they've been taught that you can't get a disease once you have positive IgG antibodies. They don't understand latent viral infections.

They probably get in trouble from higher powers like their registration body etc.
They think that based on outdated information. Based on the new evidence, there is no chance to face legal consequences. It's the same as with Ivermectin. Physicians are scared to use anything that isn't recommended in the guidelines, even if there is plenty of evidence to support it. And evidence is all that the court needs. But court hearings are also time-consuming and annoying. Of course, any physician tries to avoid it even if they think they are on the right side. Physicians aren't angels. It's just a job to them, in the end. A noble job, but still a job they don't want to risk losing. Even if it means discarding uncomfortable patients.
 

Pyrrhus

Senior Member
Messages
3,836
Likes
11,501
Location
U.S., Earth
That is actually very significant. What level of awareness do you think there is about this among pathologists, doctors, and researchers of viral infections or of ME?
Either there is a lack of awareness or they are taught in medical school to grab onto the first positive result they can find, and not "waste time" on further investigation, in order to expedite the processing of patients.

This has changed right? At least somewhat? With official criteria or in real life practice, is virus detection leading to exclusion of ME still?
The current case definitions, the CCC and the ICC, are not exclusionary criteria. They do not exclude diagnosis of ME because of positive viral results.

My question still remains about how often non ebv viruses are tested for anyway when it's months after symptoms started. I would think it is not common among typical doctors.
Regardless of how common or uncommon it may be, the larger problem is that for most viruses that cause disease there simply does not exist any commercially available diagnostic test.
 
Messages
68
Likes
156
I am also a Long Covid patient, and I have been following up with the whole Ivermectin and Maraviroc debate.

Here are my two cents on Maraviroc.

(1) A lot of people with post-Covid syndrome experience symptoms that resemble MCAS.
(2) RANTES has been shown to trigger Mast cell degranulation: https://onlinelibrary.wiley.com/doi/abs/10.1034/j.1601-0825.2001.70408.x
(3) Being a RANTES-Antagonist, Maraviroc acts on that pathway.

And supporting the MCAS theory, we have this pre-print that has just been released, talking about the role of antihistamines in the treatment of Long Covid patients (patients were treated with stronger doses of H1 and H2 blockers): https://www.medrxiv.org/content/10.1101/2021.06.06.21258272v1
In the HRA-treated group significantly more (72%) reported a reduction in the number of symptoms.
I do not know if there is any other strong evidence showing that Maraviroc acts on the root of the problem, whatever that is.

Comparing the price and safety profile or anti-histamines and Maraviroc, I would go with the first one. It still does not fix the problem though, but maybe it buys us more time to figure this out.


Now about Ivermectin, I am not so sure. I actually tried that at some point (around month 7). No side-effects, but it did not do anything. People usually mention that it has a good safety profile, but I would still be cautious about it. It is known to be neurotoxic. Not an issue in general, since it cannot cross the blood-brain-barrier. However if you suspect a leaky barrier, and start experiencing neurologic symptoms, you should stop it right away. I heard that happening before, even though it is uncommon.
 

Hip

Senior Member
Messages
16,801
Likes
37,078
Cort just published an article on Dr Patterson's long COVID treatment:

Has Bruce Patterson Cracked Long COVID?

Patterson thinks the chemokine RANTES (also called CCL5) is a key factor in long COVID. He also published a paper in May last year showing that RANTES was high in regular acute COVID patients.


I am not sure if there is any relation, but RANTES is high in those very rare ME/CFS patients whose illness is due to a chronic bacterial infection in a cavitation (hollow space) in their jawbone — see this thread.

Some papers of interest:
 

wastwater

Senior Member
Messages
1,217
Likes
878
Location
uk
Is a statin going to be correct,I was offered this but refused as I felt I would fair badly in fact I maybe recommended towards keto and more fats
Is the basis for severe covid and maybe long covid genetics and ageing
 

sb4

Senior Member
Messages
1,555
Likes
2,737
Location
United Kingdom
I remember a thread on here where a guy claims to have got significant improvement from taking a statin. Could that improvement be from " by inhibiting fracktalkine, it stops the monocyte cells from attaching to endothelial cells on the blood vessels" ?
 

mitoMAN

Senior Member
Messages
576
Likes
1,080
Location
Germany/Austria
Quoting a post in a FB group:

Just met w Dr Patterson.

Based on my labs, he recommended IVM and ROC. For those who haven’t met w him yet or haven’t kept up w his most recent findings: he said two papers will be coming out shortly that explain viral proteins are hiding out in cells along the endothelial lining of blood vessels. Made worse by exercise. This isn’t ME / CFS. Once treated, we should begin to heal. We should be able to resume exercise and normal activity. He didn’t say, but I’m guessing the POTS and MCAS will also subside in time. Guys, this is giving me so much hope! Will report back after treatment.

xx


* Edited after learning more. Healing may take time. But clearing the viral debris is important to bring down inflammation and begin healing.


What do you guys think about this?

I attached the Lab results of the person
Did this patient report any follow up?

Also:
Do we have dosage guidelines posted somewhere by patients of Patterson?
 
Last edited:
Messages
1,770
Likes
4,016
Location
United Kingdom
I think for long covid there's a very good chance you'll get some treatments within a year or two. Whereas for those of us with ME who didn't get it from covid it's harder to say because at the moment at least the total funding is skewed towards long covid.

We just have to hope that bears fruit for both lc and ME at the same time. That's my hope at any rate.

I guess what I am trying to say is if you think there is the possiblity of proven treatments where there's an actual scientific study to back up why lc occurs. I'd personally wait for that. Experimentation is out of frustration and desperation. But it's fraught with its own stresses and could make you worse without any real idea of why it made you worse.

Sincerely hope you find something that helps though.