Dr Patterson on Long Haul Covid vs ME/CFS

[Martin aka paused||M.E.]

As far as i know they haven’t done any studies on it’s effectiveness on long covid or cfs.

I wish they would at least do some, there is obv a lot of interest in the drug and its relation to covid.

At least then we would know.

We don't hate IVM.
It's about this:

“ The paper’s irregularities came to light when Jack Lawrence, a master’s student at the University of London, was reading it for a class assignment and noticed that some phrases were identical to those in other published work. When he contacted researchers who specialize in detecting fraud in scientific publications, the group found other causes for concern, including dozens of patient records that seemed to be duplicates, inconsistencies between the raw data and the information in the paper, patients whose records indicate they died before the study’s start date, and numbers that seemed to be too consistent to have occurred by chance.”

“ The paper’s withdrawal is not the first scandal to dog studies of ivermectin and COVID-19. Hill thinks many of the other ivermectin trial papers that he has scanned are likely to be flawed or statistically biased. Many rely on small sample sizes or were not randomized or well controlled, he says. And in 2020, an observational study of the drug was withdrawn after scientists raised concerns about it and a few other papers using data by the company Surgisphere that investigated a range of repurposed drugs against COVID-19. “We’ve seen a pattern of people releasing information that’s not reliable,” says Hill. “It’s hard enough to do work on COVID and treatment without people distorting databases.”

https://www.nature.com/articles/d41586-021-02081-w

 

[bensmith]

Yes so we still need a proper study then.

 

[Martin aka paused||M.E.]

Yes so we still need a proper study then.

What we say is that it's not justifiable to recommend IVM as a treatment for COVID or ME atm

 

[TiredBill]

What we say is that it's not justifiable to recommend IVM as a treatment for COVID or ME atm

100%.

Bill

 

[bensmith]

Tough prospect to wait to get justification for me meds, if you are going to disregard individual claims. What justification did you have when taking abilify?

 

[Badpack]

Tough prospect to wait to get justification for me meds, if you are going to disregard individual claims. What justification did you have when taking abilify?

Nothing really. It's all trial and error. My list of failed medications is longer than the years i lived by now. So you can just go with the little infos we have and your gut instinct i guess. For now Ivermectin seem political abused by right wing USA to spin some strange narrative, i mean even their cult leader trump today said take the vaccine lol. So there is a small difference to abilify which was kinda discovered without an agenda. And it help some ppl quite a bit, at least i heard. But i have to say, i watched Martins instagram and another german fellow who improved greatly on abilify and both kept their pale cfs skin perfusion and still looked sick to the bone to me. So i guess its only a symptomatic approach. For me the answer is brain perfusion. And abilify seems to improve this quite a bit. I think thats all the magic.

https://twitter.com/i/web/status/1429093087775756296

https://www.healthrising.org/blog/2021/08/18/pots-long-covid-chronic-fatigue-connection/

Seems like the only real important finding to me to this date. Covid = Cfs = dramatically reduced brain perfusion.

Thats why i am still interested to see some ppl try out maraviroc. As it is passing the blood brain barrier. So it can reduce brain inflammation and improve the blood flow.

 

[bensmith]

@Badpack seems a questionable distinction to me . You and martin see improvement in the community. You take the drug, martin improves.

that is what happened to me. I see ivm in the long covid community, i take it, i improve.

purdue pharma used bunk science to push opiates. They are drug pushers, dealers. But don’t assume opaites are not a needed medicine because of some bad actors.

the most annoying part of this is that i do agree with ya’ll, i think it is over hyped, ivm. I think its unlikely to improve acute infection outcomes. But i can’t deny it seem to help me, fairly significantly.

The most frustrating thing is that we will likely never know sciencically the truth of the matter. I just hope i don’t lose access to a med i need, like others did with opiates, because or politics or abuse of a given med.

 

[Badpack]

@Badpack seems a questionable distinction to me . You and martin see improvement in the community. You take the drug, martin improves.

that is what happened to me. I see ivm in the long covid community, i take it, i improve.

purdue pharma used bunk science to push opiates. They are drug pushers, dealers. But don’t assume opaites are not a needed medicine because of some bad actors.

the most annoying part of this is that i do agree with ya’ll, i think it is over hyped, ivm. I think its unlikely to improve acute infection outcomes. But i can’t deny it seem to help me, fairly significantly.

The most frustrating thing is that we will likely never know sciencically the truth of the matter. I just hope i don’t lose access to a med i need, like others did with opiates, because or politics or abuse of a given med.

By all means, if it is helping you, take it. We are just saying that the science is pointing in the direction that its probably useless afaik.

 

[bensmith]

i thought there wasnt any science showing it is useless for long covid or me though. Have they done studies for this drug and those conditions?

 

[Badpack]

i thought there wasnt any science showing it is useless for long covid or me though. Have they done studies for this drug and those conditions?

Not to my knowledge, they only showed in experiments that it can kill covid in test tubes in extremely high doses. Long covid isnt a chronic infection, even if you believe pattersons theory of dead virus debris, so there isnt a need to kill covid viruses. So besides not working for acute covid, there is even less evidence / common sense to use it for long covid right now. Because there is no train of thought why it should help.

 

[bensmith]

@Badpack i guess thats just where we differ.
You and martin seem to think there must be some logical linear reasoning for a drug in the context of the disease. I’m not sure i lean that way. We don’t know why ssris work, when they do, for depression. But still millions take them daily.

but i do agree i don’t believe Patterson's theory necessarily. Or that is why ivm works, especially that. And i certainly don’t think its killiny covid in the body, long covid or otherwise. I just think it works some, for an unknown reason.

but i think the first thing a person should ask themselves in this situation, is there a decent number of people claiming improvement from any drug, and proceed accordingly. And i guess we disagree there, but honestly do we? People take abilify on here. Do they even have a working theory with it yet?

either way i think its justifiable mention the drug helping and for it to not be shit on, at least in this context.

 

[sometexan84]

Yea, thats pretty troublesome. He acts like Cfs has an easy treatment. And that long covid is something really different here. Makes you really question his intellect/information.

This.

I don't know why so many people are going crazy about this guy. He does something I just can't stand, where he makes fact-based remarks that are not fact. His unjustified confidence is prob something that's helped get him in the spotlight.

Like, you'll hear someone like Dr. VanElzakker say things like "Well, we think this might be related to blah blah...". I appreciate this. It makes me trust him more because he tells the truth, and doesn't make fact-based statements that aren't actually fact.

All I can say is I personally think it's a waste of time (and potentially money) to follow Dr. Patterson. I'll feel better when he starts to fade...

 

[dylemmaz]

my cfs specialist prescribed me ivermectin many months ago. her reasoning was for neuroinflammation and to act as an anti inflammatory alongside my antiviral. i didn’t ask further. also never took the ivermectin despite getting the script filled because i was worried about potential neurotoxicity

 

[bensmith]

This.

I don't know why so many people are going crazy about this guy. He does something I just can't stand, where he makes fact-based remarks that are not fact. His unjustified confidence is prob something that's helped get him in the spotlight.

Like, you'll hear someone like Dr. VanElzakker say things like "Well, we think this might be related to blah blah...". I appreciate this. It makes me trust him more because he tells the truth, and doesn't make fact-based statements that aren't actually fact.

All I can say is I personally think it's a waste of time (and potentially money) to follow Dr. Patterson. I'll feel better when he starts to fade...

Agreed. His confidence seems foolish and unjustified.

 

[Rufous McKinney]

Yes so we still need a proper study then.

my GP gave me an RX for ivermectin.....8 doses, the antiparasite protocols (NOT a prophylactic dose).

my GP claims he is Nobel Prize worthy- so I must assume he gave me this because he believes it would help if I got COVID (not vaccinated when he gave it to me in June). Its here, if I need it.

He has indicated disapproval of the failure to treat early COVID. Here in US.

I did not discuss it with him, and don't know if the withdrawal of the paper above is an issue for him.

 

[hapl808]

Tough prospect to wait to get justification for me meds, if you are going to disregard individual claims.

I think this is what makes medicine difficult.

I prefer great DB-RCT for anything, but it's quite difficult for CFS (or Long Covid) because we still don't have reliable biomarkers or an understanding of the illness(es). If you're trying to cure HIV, then you can choose 'negative 4th gen HIV test' as an endpoint. That's probably a good bet to show you've cured HIV (although could be issues there as well).

I have not seen convincing evidence on IVM - in either direction. I'm not sure it works for anything with Covid, but also not sure it doesn't work.

I'm skeptical on everything. When people say they have CFS or lyme or CIRS or any controversial disorder where the diagnosis is qualitative and vaguely differential, it's problematic. For instance, this is why I'm very skeptical of the whole field of psychiatry is because their diagnoses are qualitative and subjective. Go to three psychiatrists and get three diagnoses.

In general, I dislike confidence in assessments when it's not justified. I have seen too much of it in the medical establishment toward things like CFS, and vice versa in the chronic illness community toward the disorder du jour.

A bit more humility and awareness of the difficulty and level of uncertainty in these fields would probably help everyone.

 

[Martin aka paused||M.E.]

Tough prospect to wait to get justification for me meds, if you are going to disregard individual claims. What justification did you have when taking abilify?

I think you misread my posts. I've never said: it doesn't help or don't take it, right? I said that there is no evidence that it works. That's why there is no justification to promote it IN THE MEDICAL COMMUNITY... No one questions you... As @Badpack already said : if it helps you, stay with it by all means!!!

 

[bensmith]

Kind of going around in circles now i think. I had the same conversation earlier with badpack,

 

[Treeman]

Ivm worked for me, on my warts. I visually watched them disappear. For me ivm appears to help my immune system. Abilify did nothing but worsen my sleep. The only other thing that significantly helped me before wearing off was high dose B1, which seems improbable.

No one knows what causes my illness, not even all the combined medical specialists in the world that's why I'm here trying to get some help by safely experimenting.

Medicine in some ways is still a child, I'm hoping someone stumbles across something that helps me significantly, soon.

 

[Martin aka paused||M.E.]

Kind of going around in circles now i think. I had the same conversation earlier with badpack,

I only responded to your question.