Mother Jones article: Desperate Patients Are Shelling Out Thousands for a Long Covid Cure. Is It for Real?

@5vforest

If you don't mind elaborating....according to IncellDX's theory did your blood test confirm the need for treatment with maraviroc/paravastatin, or do they prescribe to everyone regardless of test results?

 

I believe that the cytokine testing is highly suspect until proven otherwise

 

It seems like the covid version of Myhill's mitochondrial test score: take lots of different measurements, then combine them into some sort of score to get a totally meaningless number that apparently indicates the level of severity.

 

Brandon and Dr Patterson also appear in this article from early last year (about half way through): https://www.postbulletin.com/newsmd...haul-patients-and-physicians-look-for-answers

 

Is there a way to reach out to Solve ME? i forgot the name of the woman who comes and post here.

This story has huge commonalities with the ME world i am afraid, historically and currently. Then social media behaviors (closed groups, blocking negative people). The special testing, which still occurs to this day (Armin lab is an example but there are others). Discrepancies between labs. The preying on desperate people. Unusual protocols using off-label drugs without sufficient clinical trials and likely not enough surveillance for adverse events.

 

I wonder whether CARP is just the start of the GARP - graded anagram rehabilitation programme. It will be five letters tomorrow.

 

Reminds me of the spinal surgery business model.

 

There are a lot of covid long haulers in my ME/CFS group who are new to this and are getting sucked into these therapies quite easily, including the spinal surgery one but also the apheresis one or all the YouTube coaches, or basically anything that they see popping up in the English-language social media. Some of these therapies lack any kind of decent academic literature, others have a case series study or something similar at best.

So there have been more and more people in my group presenting these as cures, things that work and that people are treated with them successfully. They think this must be true, since these are real patients and real doctors, not some quacks and paid actors. After a while I got tired of giving long explanations to everyone about why we don't know for sure if these are really efficient treatments yet (or why some of them are BS). So I decided to write a detailed article on the difference between these case studies and RCTs (or the lack of any kind of studies) in a tone that is easy to understand, so from now on I'll just add the link for them to read.

But the thing is that long haulers are a huge and receptive market to this unfortunately.

 

Methylation protocol, gc-maf, Cci, XMRV, biofeedback, brain stimulation, brain retraining, LP…It’s a market for desperate people and predatory practitioners offering services that are not quite cooked.

 

I do hope that that means what I think it means.

If it doesn't, it ought to.

 

Exactly this. Just an extention of what has been going on in our community for decades now.

 

Desperation overrides common sense.

Hubris Syndrome.

 

I have been having some trouble understanding this comment and some of the stuff on twitter about this including this tweet. Perhaps I didn't see something in the article that is there (I thought it was generally a good article but have not been able to read it closely yet).

 

Mostly that it came off a bit like it was either making the accusation that supporters of this program were paid actors, and not just desperate patients who felt like something indeed helped them. (Even if we on s4me are well aware that their recovery and the fact that they were taking maraviroc at the same time might well have been a coincidence.)

The author seems very obsessed with events on social media (unfortunately this navel gazing is all too common amongst journalists these days), and didn't make an attempt to quote any patients besides "Owen".

So I am not surprised that she will get some backlash from patients who feel as though they have been helped by Maraviroc.

 

Thank-you for explaining @5vforest I know what you mean now.

It didn't seem to really engage with the patient experience very much to really get a handle on how it feels to be on that end, and how and why this is happening. It's a shame that a lot of coverage goes along usual track lines for stories. Articles focussed on "scams" etc can often cultivate a sense of superiority in the reader, too, which is the opposite of what is needed here.

Edit: Although I do think it's important that this stuff is reported on, to be clear.

 

If I were writing this piece, i would have tried to interview patients who felt helped by the treatment and presented at least one such story, while also explaining that anecdotal recoveries do not mean anything scientifically and that the science doesn't show that at all. But part of the story or issue is what people are saying about the treatment, so leaving that out makes the article feel incomplete to me.

 

Wouldn't be surprised if they get a visit from the alphabet boys, or slapped with a lawsuit in the future.

 

"Alphabet boys" = Urban slang for FBI, CIA, etc.

 

I don't think this is fraudulent (although the disparate lab results one person received is clearly troubling and a "short draw" is an unsatisfactory explanation). I think this has been pushed very hard, but with good intent. The commercial milieu is so problematic though - but when government and national health systems are doing nothing meaningful for thousands/millions, the gap will be filled.

I haven't supported all the ideas proposed by this team to date (and I am flummoxed by the whole sub-therapeutic Ivermectin antiviral treatment aspect there and elsewhere), but there is probably much in the cytokine evaluation that is a useful pointer. Also blocking CCR5 and lipid manipulation may well be valid: perhaps right but for different reasons. Eg CCR5 inhibition may affect megakaryoctytes and limit numbers of hyperactived platelets.

Much of the science seems reasonable and it would be bad to lose those gains. I agree with @dave30th that the article would have benefited from including success stories. In recent years, both-sides'ing has been detrimental in media discourse, but I think it would have been beneficial here. As it stands the article implies this work is not helping patients and I don't think that's true.

It looks is if @ yodoctoryo's account was deleted by him, rather than shut down by Twitter - possibly at Dr Patterson's behest. Bruce Patterson himself has been relatively quiet for the last couple of days, just re-tweeting a couple of supporters' comments. A number of possible explanations, but most likely they are anxious and seeking to protect their ongoing work, patients and reputations (as well as financial investment).

As we keep saying, we need these promising lines of enquiry to be properly evaluated. But large portions of very large research funding continue to be wasted on re-inventing the wheel with irrelevant symptom descriptors and questionnaires.

ETA: as pointed out a couple of comments down, by "including success stories" I mean "patient-claimed success stories". We don't have actual trial data to judge this objectively.