News from Dysautonomia International

I'm confused. Are they referring to POTS and M.E interchangeably?

 

I saw Dr Raj in his dysautonomia clinic in Calgary for an assessment a few years ago. My impression was that he had no understanding of ME nor was he interested in gaining an understanding.

Edited to add "My Impression"

 

@Helene

Yes, I've heard this from a few of his patients.

 

This is an important point. "Graded exercise therapy" that focuses on low-intensity duration of activity does not increase cardiovascular fitness and is primarily a psychological therapy.

Effort/intensity is required (for short bursts) is required to increase fitness/reverse de-conditioning.

Tolerability is a different question. I know someone who had ventricular tachycardia (not ME or CFS) due to an issue with the nerve who could still tolerate exercise..

 

In one of the parents' groups I'm in, I noticed a few years ago that ones who were able to get tested for POTS and get suitable meds improved hugely. Many were able to then study or work and move away from the parental home.

 

I think that Dr Systrom's involvement in ME is relatively recent, so I am not totally surprised that he is still unclear about some aspects. The PwME he sees are presumably pretty mild, as they are doing CPETs.

 

For me this highlights the dangers of clinicians and researchers being viewed as experts on ME, or any other conditions, when the experience of patients that they have are of the ones that go to their clinics and labs i.e. typically those that are less severely affected. They may well be talking accurately about the patient sub-group they see but they, deliberately or not, extrapolate that to the entire patient population.

 

Unfortunately, Dr Systrom seems to be resolvedly pro-exercise but his statements in this New York Times article about exercise in long Covid (and ME/CFS) are certainly not substantied:

“There are both patients and doctors who are vehemently against any exercise” because of these issues, Dr. Systrom said. But he also said that exercise can be possible, and even beneficial, after long Covid patients receive proper treatment. “If you can get the patient in a better place with medications, then you can embark on a graded exercise program without precipitating crashes,” he said.

https://www.nytimes.com/2022/02/12/well/move/long-covid-exercise.html

 

If wishes had wings we could fly them all the way to the Moon.

They don't, grow up. It's the inability to learn that is disappointing, if he can't learn this after all this time, what else is he completely missing the point about? The way he says we are vehemently against exercise. JFC David, what do you think people with allergies think of the thing that makes them sick? You can always frame it as some weird reaction if you want to.

We are in such terrible hands, after all this time and this is what it gets us. Good chance this is the final straw that makes me end my OMF contributions. What's the point if the people spending that money can be so wrong about basic things? Might explain the lack of progress, frankly.

 

I am a severe/very severe ME patient living in Massachusetts with no medical, dental (I have 2 broken teeth), or eye care. I have been sick since 1983 at age 17. I’m in a situation now where I am desperately trying to avoid the ER. I’m not even vaccinated because when they first came out I didn’t qualify for a home visit! Then I tried to get help from a local doctor’s office with a visiting nurse to no avail. Eventually, I learned that Massachusetts changed their rules and I planned on getting home vaccination but I had a huge setback with my gut that is all that I have been able to deal with. I weigh around 86 lbs. at 5 feet 5 inches.

Since I don’t expect as an individual to be believed by any health care professionals, my medical alert bracelet, which is made of three plates, has one plate that lists ME/CFS organizations. There are also access codes to link to a website where I uploaded more information. My bracelet includes a link to https://endmecfs.mgh.harvard.edu/. As the ER that I would go to is affiliated with Mass General Hospital, I thought this would be helpful. The website I uploaded documents to also references Systrom (I can’t even dignify him right now by writing Dr. Systrom). In ME world, where I am frequently shocked by what goes on, Systrom’s remarks are particularly stunning and hit very close to home for me.

The worst thing about this situation are all the conflicts of interest that keep organizations and individuals from addressing this the way that it should be addressed. Repercussions for the stunningly wrong statements Systrom made won’t fall on Systrom, they will fall on patients.

Does @dave30th have the courage to address this for us so that is doesn’t completely get swept under the rug at the expense of our lives and further stigmatization?

 

Dysautonomia International: Dysautonomia Awareness Month October 2023
http://www.dysautonomiainternational.org/page.php?ID=244

PoTS UK: PoTS Awareness Day 25th October
https://www.potsuk.org/about-us/pots-awareness-day-25th-october/

 

DysautonomiSverige (dysautonomia Sweden) shares a series of personal stories on their Instagram account. Here's the first one:

#DysautonomiSverige

 

Today, 25th October, the famous indoor arena Scandinavium in Gothenburg, Sweden, will be lit up in turquoise lights for Dysautonomia Awareness Day. Pretty amazing, I think

Code:

https://www.facebook.com/gotevent/posts/pfbid0E17vmCMbywCoJ9XX5Pm2Dt4rfd9tuU86ALHVkFHD7c4Kkyeuzg89GauWKBUSbrFCl

 

Great article (in the sports pages)

Manifestation på Scandinavium – för sjukdomen POTS
https://www.gp.se/sport/manifestation-på-scandinavium-för-sjukdomen-pots-1.113650493

 

A lovely article in a Swedish local newspaper, published in September.

Hunden Azlan ska varna Ally – innan hon svimmar
https://www.svt.se/nyheter/lokalt/gavleborg/hunden-azlan-ska-varna-ally-innan-hon-svimmar--078h6f