Dysautonomia International 10th Annual Conference: 'Collaborating for Cures', July 14-17, 2022

Join Dysautonomia International for the world's largest conference on autonomic nervous system disorders, broadcast online July 14-17, 2022! Learn about dysautonomia and related conditions from the top experts, connect with fellow with patients, caregivers, and medical professionals, find out how to get involved in dysautonomia research and advocacy, and more! This year's conference is extra special as we celebrate Dysautonomia International's 10th Anniversary, marking a decade of dysautonomia advocacy.

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TOPICS
Our expert speakers will be presenting on postural orthostatic tachycardia syndrome, orthostatic intolerance, orthostatic hypotension, syncopal disorders, inappropriate sinus tachycardia, Long COVID dysautonomia, gastrointestinal dysmotility, Ehlers-Danlos syndrome, mast cell activation syndrome, Sjogren's and other autoimmune dysautonomias, and paraneoplastic forms of dysautonomia. We'll also hear updates on brand new research, pharma and non-pharma treatment approaches, lifestyle tips, advocacy training, patient stories and more!

https://web.cvent.com/event/843f4246-2147-4653-bfc4-caafce8a8192/summary

 

The agenda shows

"Friday, July 15, 2022

9:00 AM - 7:30 PM EDT

Research Updates on POTS, AAG, OI, Long COVID, ME/CFS and more!"

Speakers that I recognise (for both good and bad reasons) from the list of speakers so far are

Jessica Eccles, Brighton & Sussex Med. School
David Putrino, Mount Sinai Health System
& David Systrom, Brigham and Women's Hospital

 

It seems that during the talk on exercise for ME/CFS, which included Prof Visser, Dr Systrom, Dr Raj and another POTS rehab expert, Dr Systrom said that exercise cannot cause long-term worsening of ME and Dr Raj said that one could exercise their way out of PEM.

Edit: Full excerpt:

Lauren Stiles (founder of Dysautonomia International): “Do you see [long-term worsening] in ME/CFS patients who push too much?”

Dr Systrom: “Rarely… There’s a spectrum of crashes… The super severe [crashes] can last months… most of the time though, when I hear about a severe crash and that’s really at one end of the spectrum that lasts months, it’s related to an infection – a more severe infection... rather than overdoing physically.

So I think it’s pretty rare that any patient can have a sustained crash due solely to physical activity… I don’t think it’s super common and I don’t think it should be a huge concern.”

He also specifically referred to his approach as "graded exercise therapy."

https://twitter.com/user/status/1550503425019990016

 

I just watched this session. It was a discussion between Dr Lauren Stiles (hosting), Dr David Systrom, Dr Satish Raj and Dr Tae Chung. Would have been good if Prof Visser had also been present, but a Covid infection ironically prevented this.

Some initial discussion on overlaps between POTS and ME/CFS, eg as a spectrum or Venn diagram. The group noted that many POTS patients have PEM (historically 60% by Fukuda). 100% POTS patient said to have fatigue. "Most" patients seen in POTS clinic have ME/CFS - noting the bias in clinic referrals. Systrom found 25% ME patients had formal POTS. Noted higher percentage of symptomatic orthostatic intolerance. 95% have low filling pressure / preload failure.

At the far ends of the spectrum there was mention of POTS patients that can run the Boston marathon. Also Olympic athletes that developed POTS post virus or concussion, "rehabed" and returned to Olympic competition. Suggests not everyone with POTS has ME/CFS.

Group agreed defining feature of ME/CFS is PEM not fatigue. Distinguishes from fatigue of other illness, radiation therapy etc.

Systrom discusses mestinon and pyridostigmine. Wonders if those taking placebo in their trial might be signalling the beginning of PEM on exercise day 1. Notes the logistic difficulties of the 2 day CPET. Hopes multi-omics might show PEM at day 1 without invasive catheters and more simple exertion, including tilt table.

Chung discussed rehab via "gradual exercise training" at very low level, perhaps supported by IV fluid loading. Months.

Raj discussed the POTS patients they are seeing are generally pretty bad by virtue of waiting to be seen. Most have PEM. Not being formally studied or clinically confirmed, but "crude" history is indicative ("if I try and do something I can't get out of bed for two days"). Says "with our exercise approach" over time (several years) people "get through that" and "train out of that post-exertional malaise". Thinks they don't go back to pre-illness normal. Exercise not the cure-all but "they get better, they improve."

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. Start extremely low/no resistance, with only input being speed, i.e. very slow. "Over time they will speed up, they will want to add resistance." "It take time to get over post-exertional malaise ... six weeks ... before people notice any improvement, six weeks of feeling like shit when they do the exercise." "Exercise gets easier once they get through that. Then they feel worse when they don't do it." That is their experience of PEM in the tachycardia group over several years. Not speaking to the non-tachycardia group that is chronically fatigued. You may be able to train out of it, but there is zero data. "I'm fairly convinced clinically that you can train out of it — over time, slowly."

[Suggests to me that they could be observing natural recovery, while making the patient feel bad?? Are they too focused on the physiology and ignoring the blocking biochemistry. I guess it's possible that the biochemical pathways could be trained back to normality, eg overcoming the itaconate shunt, broken autophagy or whatever is actually underlying. If exercise were the only valid approach, absent pharmacological interventions, I imagine you would need tight monitoring and almost real-time feedback on the biochemistry, or a lot of good fortune.]

 

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'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..

 

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.

 

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?