USA Minnesota - Dr Tam

[Dakota15]

Post copied from US News, and some subsequent posts moved

Sharing one of the lead stories on our evening news tonight in Minneapolis, MN. This is the third ME / LC feature this reporter and station has spotlighted since December. Some of you may also be familiar with Dr. Ruby Tam or ME/CFS Clinic Minnesota.

KSTP News (ABC Affiliate): 'Minnesota’s first ME/CFS doctor on a mission to expand care to ‘everybody who has the disease’’

''It’s a debilitating disease associated with profound exhaustion, and it’s recently become intertwined with long COVID.'

‘...I owe everybody who has the disease a responsibility to get the care they need to them, either myself or educate their local providers and practitioners to help get them better.”

 

[shak8]

In the article above the Minnesota ME/CFS doctor Dr. Tam is a big proponent of the Perrin Technique (https://theperrintechnique.com)

A type of of miraculous massage, apparently.

 

[Dakota15]

Dr. Tam also trained with Bateman Horne Center & is an incredible ally in this field (testifying at the MN Senate last year for the legislation that was passed for ME & LC, as one example).

I can’t tell if this is bait @shak8? Apologies if I read incorrectly

 

[Trish]

Dr. Tam also trained with Bateman Horne Center & is an incredible ally in this field (testifying at the MN Senate last year for the legislation that was passed for ME & LC, as one example).

I can’t tell if this is bait @shak8? Apologies if I read incorrectly

It's a statement of fact, as far as I can see.

The article mentions that Dr Tam is running workshops at her clinic with Raymond Perrin to teach the Perrin Technique. Perrin is a UK osteopath, not a doctor, who developed a sort of massage technique that he claims treats ME/CFS. We have a thread about it. There is no clinical trial evidence of efficacy, and it seems to me to be quackery.
https://www.s4me.info/threads/perrin-technique.8269/
https://www.s4me.info/threads/reduc...e-intervention-2022-heald-perrin-et-al.26565/

I don't doubt Dr Tam is a good ally for pwME with her free clinic, but I have no idea why she's hooking up with a quack.

 

[Hutan]

Yes, Dr Tam sounds lovely and caring, and I'm not surprised that many in the ME/CFS community are grateful for her. But there is no credible evidence that the Perrin Technique works.

 

[Dakota15]

I don’t use the Perrin Technique nor subscribe to the notion that it’s helpful. Tam advised recommendations more in line with BHC (Abilify, LDN), but that’s my n=1.

 

[Dolphin]

A confusing thing is a D.O. (doctor of osteopathic medicine) in the US is equivalent or close to equivalent to a medical degree as I understand it.

 

[Mij]

Merged thread

Tam’s journey began with one of her family medicine patients in 2015. She couldn’t figure out what was causing their persistent fatigue, which was debilitating enough to keep them out of work. Tam said her patient ultimately had to seek that answer across the country.

https://kstp.com/kstp-news/top-news...expand-care-to-everybody-who-has-the-disease/

 

[Kalliope]

This is the treatment:
Beyerl said things started looking up in the last year, ever since Tam started using an osteopathic massage therapy called the Perrin Technique “to help patients drain the inflammation from the body,” according to Tam.

The article links to this website with more information:
https://www.mecfsclinicmn.org/

 

[Hutan]

Tam advised recommendations more in line with BHC (Abilify, LDN), but that’s my n=1.

There isn't good evidence for Abilify or LDN being useful in ME/CFS either - not to discount the reports from patients that they found these drugs helpful.

It points to a problem that goes well beyond Dr Tam, and probably applies to every ME/CFS doctor. Doctors want to help, and patients demand treatments they have heard about. And so doctors provide unevidenced treatments.

 

[Kitty]

Tam started using an osteopathic massage therapy called the Perrin Technique “to help patients drain the inflammation from the body,”

That's impressive. Not as much as the old lady on my mam's estate who cut the chip out of her bus pass and glued it to a magic wand, but still.

 

[Hutan]

the old lady on my mam's estate who cut the chip out of her buss pass and glued it to a magic wand

 

[NelliePledge]

@Kitty is on fire this evening

 

[Dakota15]

Quick shameless plug of appreciation to ME/CFS Clinic Minnesota & Dr. Ruby Tam's continued tireless efforts for helping this patient population (screenshot from LinkedIn) in boundless ways.

Fingers crossed this passes the finish line for approval, as well as #MEAction's work as well.

 

[leokitten]

There isn't good evidence for Abilify or LDN being useful in ME/CFS either - not to discount the reports from patients that they found these drugs helpful.

It points to a problem that goes well beyond Dr Tam, and probably applies to every ME/CFS doctor. Doctors want to help, and patients demand treatments they have heard about. And so doctors provide unevidenced treatments.

To clarify your definition of “good” evidence is human clinical trial evidence. There is quite a lot of anecdotal evidence that Abilify can help some pwME tremendously, which I know it’s not validating evidence but it’s evidence enough to test a hypothesis or for a well meaning doctor to empirically trial a treatment on a patient if the patient wants it and fully understands the risks, especially since there are no validated treatments.

If I (and many others) didn’t just go for it and try low dose Abilify and waited for a gold standard clinical trial I would continue to live in agony until I die years later with no treatments to give me even a temporary respite. The best indicator of the future of ME research is the recent past and people have waited decades for help we are likely going to wait decades more.

If I didn’t try Abilify I wouldn’t have had the three temporary but unforgettable periods of enjoyment and having my life back free of most ME symptoms for a while. As I sit here now in bed writing this my ME symptoms are mostly back even through I’m still taking Abilify every day I know it’s not working well anymore and I have to stop now and take another long break. But I’ll be counting the months until I can do it again and I’m quite worried this time around because it’s only worked for a bit longer than a month and I don’t know exactly why.

 

[Hutan]

To clarify your definition of “good” evidence is human clinical trial evidence.

I do think that any treatment that a doctor offers should either be backed by good quality trial evidence or the treatment should be offered as part of a trial. I think a doctor who, after treating the first few patients, doesn't do that is part of the problem of the lack of clarity around what works and what doesn't.

When I look at the anecdotes for LDN, I don't find them convincing. People have trouble finding the right dose, then have a moment when LDN is working, and then it's not. Lots of people report no benefit. I don't know about Abilify. ME/CFS does fluctuate. I convinced myself that I was better after taking a drug when I wasn't.

But, we are heading off-topic for this thread. If people want to continue the conversation, we have threads on LDN and Abilify.

 

[Jaybee00]

Yes, waiting 10 years for someone to raise 10 million USD, conduct a trial and publish results seems like a strange hill to die on when you could take 0.5 mg of Abilify for 15 days to see if it works.

There have been likely many thousands of prescriptions for LDA (low dose Abilify) with many people responding.

The other thing is that you could wait 10 years, and even if the trial shows efficacy, you personally might not respond because not everyone responds to all drugs.

(Commenting on LDA, not LDN).

 

[Jaybee00]

or the treatment should be offered as part of a trial.

This is a perfect world scenario. For example, in my area of the USA the wait to see a GP as a new patient is close to a year. Really. No lie.

So instead you can see these people called nurse practitioners. These folks wouldn’t have any idea how to conduct a clinical trial. Things might be completely different in Oceania or the UK.

 

[leokitten]

When I look at the anecdotes for LDN, I don't find them convincing. People have trouble finding the right dose, then have a moment when LDN is working, and then it's not. Lots of people report no benefit. I don't know about Abilify. ME/CFS does fluctuate. I convinced myself that I was better after taking a drug when I wasn't.

In my case I can wholeheartedly tell you this is not a fluctuation, my illness doesn’t fluctuate to this extent where mostly goes away all on its own or because of placebo effect. Every single drug I’ve ever tried never worked at all for me until this, so I don’t suffer from a trigger happy placebo effect. And if it were due to placebo effect then why the first two times I had the same response that lasted about the same amount of time (months) and now this third time the response was quite different? I fully expected it to work the same as before. Anyway I digress, but I promise you it’s not a placebo effect one day they will find out what is causing ME symptoms for many of us and we’ll all say ohhhh that’s why dopamine-serotonin partial agonists had a good effect for a while in so many patients.

 

[leokitten]

The other thing is that you could wait 10 years, and even if the trial shows efficacy, you personally might not respond because not everyone responds to all drugs.

Exactly, just like for these “miracle” diabetes and obesity GLP-1/GIP drugs, even for these 10-15% of patients in phase 3 clinical trials were non-responders.