News from Dysautonomia International

Lauren Stiles describes being bed-bound for two years, with POTS/ME/fibromyalgia. Recovered over 8 years. Eventually went snow-boarding and gave herself rhabdomyolysis after just four runs. [Suggests cardiovascular and metabolic systems were not completely recovered at that stage.]

Systrom describes medically optimising the patient before starting a graded exercise programme. Favour horizontal exercise: recumbent bike, rower, swim. Governors are acute symptoms and PEM, building in a recovery day and slowly build up to upright exercise. Do not precipitate crashes, attempt to do this in a humane way with medical treatment.

Chung encourages to carefully watch symptoms and HR as a combination. Notes that pushing through causes problems the next day, but that patients can work out that HR upper limits. Raj doesn't recommend HR limits, but notes "patients routinely do get worse in the beginning."
 
"Is it long-term dangerous [to push through]?".

Systrom: "Rarely. It's all based on history, not so much some biologic outcome that is measurable that one can say 'this is permanent.'" "There's a spectrum of crashes in dysautonomia and ME. The super-severe ones can last months - there's no doubt about it. ... When I hear about a severe crash ... it's related to an infection, rather than overdoing physically. I think it's really rare that a patient can have a sustained crash due solely to physical activity." "I don't think it should be a huge concern."
 
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"
 
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SNT Gatchaman said:
For patients with tachycardia: "I believe most of us believe in some form of graded exercise treatment." Means different things to different people — they use recumbent cycle and grade on effort, not duration.
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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..
 
Mij said:
I'm confused. Are they referring to POTS and M.E interchangeably?
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I've listened through twice now, and it's not exactly clear. To my mind most POTS patients have ME — it's just that they have sufficient tachycardia that they go to cardiologists who say "POTS". Orthostatic intolerance is the key symptom complex and POTS is a subset of that. Probable that some can have POTS without PEM and so aren't ME, but they need to be very clear about which groups they're investigating and treating.
 
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.
 
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?
 
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
 
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Great article (in the sports pages) :thumbsup:

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

Millions of people suffer from it, but few people know what it is. On Wednesday evening, Scandinavium will light up in the colour turquoise - to draw attention to the hard-to-diagnose disease POTS.

[...]Being affected by POTS means that the autonomic nervous system is not working properly. This can lead to symptoms such as: dizziness, nausea, chest pain, fatigue, sleep problems and problems with blood circulation.

- A very clear symptom is that you have trouble standing up, you have problems with the blood not being able to circulate up to the brain and heart," says Jenny Hendel.

Frölunda player has POTS

Former Frölunda fullback Lukas Bengtsson was diagnosed with the disease a few years ago. In an interview with GP, he described how he underwent over 100 blood tests and several courses of antibiotics before the diagnosis was confirmed. To this day, he still has clear symptoms.

- "Some mornings are not the most fun. I am very tired and nauseous. Then you just have to take care of your body," he said at the time. [...]

- It is a very unknown disease and this is because there is not enough knowledge, which makes it difficult to get the right diagnosis and treatment.

- This, in turn, can create problems in the form of not receiving any sickness benefit from the social security office because they do not understand why you are ill, or problems with the employer who may find it difficult to be understanding," she says.

POTS affects all individuals differently. While Lukas Bengtsson manages to play ice hockey in the Swiss top league, it can be harder for others to function in everyday life.

- "I have had to fight quite hard to be as functional as I am today. I have symptoms every day. I can't live my life as I did before I became ill. I can't work as much as I would like and I have fatigue that limits me in everyday life," says Jenny.
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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
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Azlan the dog will warn Ally - before she faints

17-year-old Ally Lundberg from Gävle lives with H-EDS and POTS syndrome. Diseases that cause pain, fatigue and a drop in blood pressure. Now she has chosen to train her own service dog.

Azlan, a black Labrador, is only 17 weeks old but already knows several commands and tricks. The plan is for him to help his mum Ally in her daily life.

- "He will be able to tell me when my heart rate is too high, before I pass out. He will help me with normal everyday things," says Ally Lundberg.

Azlan is only at the beginning of his training, but when he is ready, he will be able to detect changes in smell when Ally's pulse increases.

- "I will train him by taking odour samples when I have a high pulse," says Ally Lundberg.

Ally explains that she takes odour samples by rubbing a swab behind her knee when her heart rate increases. She saves it and can teach Azlan to react to the odour.

- "Dogs have an incredible sense of smell," Ally says.

H-EDS and POTS syndrome

When Ally was young, she was diagnosed with H-EDS, a disease that affects joints and skin, among other things - because of this, Ally has an overly mobile body where pain and stiffness are commonplace.

- "On my bad days I'm almost paralysed, I can't talk," says Ally.

Many H-EDS sufferers also have POTS syndrome, a nervous system disorder that causes sudden drops in blood pressure and can result in fainting when standing up.

Listen to Ally Lundberg in the clip about how she will train Azlan.
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