Panel and Q&A after Unrest at Hampshire College, Feb, 2019

[Rufous McKinney]

He mentions they are supplements that can be bought from the pharmacy

Yes. We would like to know more.

I don't want to seem: pushy here, and I understand the cautious approach of researchers like we have working to help us.

But something called a supplement might help us: we have people dying here. 60 years: depreciated here.

Why can't we discuss what they might be? Why is it a secret? Why would it dangerous to know, without studies yet- that a legal supplement that can be accessed might help?

 

[toyfoof]

There are other disorders related to EDS, with an overlap of some symptoms, and one of them is called Marfan Syndrome (which also affects the connective tissue)

Thank you for this! On a self-assessment, I score an 8 on the Beighton scale, and I have both of those Marfan tests in both hands. Yet no doctor has ever mentioned EDS to me.

Interestingly, when I was 16, I was sent to a bunch of heart specialists who ended up diagnosing mitral valve prolapse, and they had me do all these movements. I remember thinking how weird it was that they were having me bend and stretch when they were looking at my heart. I wonder if they were thinking vEDS? I wonder if that was even known in 1990?

 

[Laurie P]

@debored13, I’m glad you’re getting your needs met. I saw your pass was because of mold. You’re telling me not to blame doctors. You’re being helped. But I do blame them. I’m not being helped. I appreciate the outreach they are doing but the hypocrisy also infuriates me and I’m dying because of it.

They could also try to help meet the needs of other people in the area who have nowhere to go and no one to fill anything out for them. We need care and support and a safe office too!

This office decided that the paperwork you need signed or filled out is worth doing but the paperwork poor people need them to do so that they can get care in the first place or not get booted out of the office if they have to go on Medicaid later isn’t. Someone decided that they would take the time to fill out or sign or whatever you needed them to do for your paperwork but they won’t do a Medicaid visit and do that paperwork and I find that outrageous.

You’re in. You get care. You get your paperwork filled out. I’m out. I’ve got nothing.

If Dr. Davis does a study with Dr. Lynch, I’m out. My friend who has also been sick for decades is out too.

I wrote on this thread because I am fighting for my life and trying to advocate for people who have no care but could have care if people who should know better gave it to them.

I can’t write anymore. I hope this makes sense to you.

 

[Rufous McKinney]

I wrote on this thread because I am fighting for my life and trying to advocate for people who have no care but could have care if people who should know better gave it to them.

I can’t write anymore. I hope this makes sense to you.

I can really understand how frustrated you are, and what is happening in this regard is WRONG. This all this just is not right.

We all face various versions of: such a mess. I'm barely surviving, but my husband is still here. That isn't going to continue much longer. What then?

This generates really scary: blanks in how to imagine a future, as this just keeps going on, even tho our BATTERIES died out a long time ago.

I"m glad you were able to bring this up here: its important, it needs to be said- it needs to get discussed more.

 

[i-lava-u]

Thank you for this! On a self-assessment, I score an 8 on the Beighton scale, and I have both of those Marfan tests in both hands. Yet no doctor has ever mentioned EDS to me.

Interestingly, when I was 16, I was sent to a bunch of heart specialists who ended up diagnosing mitral valve prolapse, and they had me do all these movements. I remember thinking how weird it was that they were having me bend and stretch when they were looking at my heart. I wonder if they were thinking vEDS? I wonder if that was even known in 1990?

Your post is really interesting and also sad that doctors have never mentioned EDS to you, even though some have had you do all the bending and stretching
-----
-----
I have read, although not common, that it is possible to have both EDS and Marfan.

There are other symptoms and outwardly visible signs that can be found online, for both disorders. I just listed the bare bones, as a starting point.

For Marfan, and some types of EDS, there are blood tests, that can help diagnose.

@toyfoof Besides vEDS, there is one you might want to also look into because of your mitral valve prolapse (there are currently 13 known types of EDS) it's called Cardiac-Valvular EDS (cvEDS)

 

[JES]

Yes. We would like to know more.

I don't want to seem: pushy here, and I understand the cautious approach of researchers like we have working to help us.

But something called a supplement might help us: we have people dying here. 60 years: depreciated here.

Why can't we discuss what they might be? Why is it a secret? Why would it dangerous to know, without studies yet- that a legal supplement that can be accessed might help?

I can sort of see the reason why Ron doesn't want to share any specifics. The recent CCI surgery recovery story serves as an example; as soon as there is a treatment path mentioned, there will be a lot of desperate patients (rightly so) willing to go for it immediately. Unless there is then strong evidence for the benefit of this treatment, it might end up doing harm. I suspect it could be that you need to take a very large dosage of this supplement X, which might be why Ron mentioned that nobody has tried it. Because from being a member here on PR, I'm pretty sure people have tried every supplement on the planet in an ordinary dose.

But anyway, I can see your point of view as well. The point I wanted to make was more to speculate about what the deficiencies found in patients could possibly be. I suspect they could be related to amino acids or some co-factors in cellular energy metabolism. This paper by Naviaux et al. highlighted abnormalities in several metabolic pathways, some of which could possible be aided by supplementation.

 

[toyfoof]

For Marfan, and some types of EDS, there are blood tests, that can help diagnose.

@toyfoof Besides vEDS, there is one you might want to also look into because of your mitral valve prolapse (there are currently 13 known types of EDS) it's called Cardiac-Valvular EDS (cvEDS)

Thank you! I have an appointment with my PCP in two weeks and I am doing some research prior, so I can decide what I want to bring up and ask for testing. I have added these to my list to research.

 

[Gingergrrl]

Thank you for this! On a self-assessment, I score an 8 on the Beighton scale, and I have both of those Marfan tests in both hands. Yet no doctor has ever mentioned EDS to me.

@toyfoof Besides vEDS, there is one you might want to also look into because of your mitral valve prolapse (there are currently 13 known types of EDS) it's called Cardiac-Valvular EDS (cvEDS)

Thank you for posting all of that @i-lava-u and I tried the tests (out of curiosity) but cannot do a single one of them and am not flexible whatsoever.

But... in reading all of this, I definitely think you @toyfoof should pursue being assessed for EDS and Marfans if you have a 8 on Beighton scale and can do both Marfans tests plus have mitral valve prolapse. I am hoping that your PCP will refer you to a specialist who can properly assess you.

 

[toyfoof]

I definitely think you @toyfoof should pursue being assessed for EDS and Marfans if you have a 8 on Beighton scale and can do both Marfans tests plus have mitral valve prolapse. I am hoping that your PCP will refer you to a specialist who can properly assess you.

Yes, I’m debating right now about discussing EDS or MCAS. Both seem difficult to find a specialist for. I mentioned EDS to this doctor in the fall when I asked for my cervical MRI and I don’t remember him being very interested, but that may have been because he was VERY interested in the CCI theory and we ended up discussing that.

If I can bring him information about why I want something (test, referral) and also already have the details of that thing (I had the MRI specifics; I could find specialists in the network, maybe) he seems willing to put in the request for me. I just have to approach it carefully.

 

[frozenborderline]

I have been wondering about Marfans Bc I probably have cci, am tall and thin, and have Pectus excavatum. Not sure I totally meet the wrist signs tho and everything’s has been too much for me to handle to get evaluated for everything

 

[frozenborderline]

@debored13, I’m glad you’re getting your needs met. I saw your pass was because of mold. You’re telling me not to blame doctors. You’re being helped. But I do blame them. I’m not being helped. I appreciate the outreach they are doing but the hypocrisy also infuriates me and I’m dying because of it.

They could also try to help meet the needs of other people in the area who have nowhere to go and no one to fill anything out for them. We need care and support and a safe office too!

This office decided that the paperwork you need signed or filled out is worth doing but the paperwork poor people need them to do so that they can get care in the first place or not get booted out of the office if they have to go on Medicaid later isn’t. Someone decided that they would take the time to fill out or sign or whatever you needed them to do for your paperwork but they won’t do a Medicaid visit and do that paperwork and I find that outrageous.

You’re in. You get care. You get your paperwork filled out. I’m out. I’ve got nothing.

If Dr. Davis does a study with Dr. Lynch, I’m out. My friend who has also been sick for decades is out too.

I wrote on this thread because I am fighting for my life and trying to advocate for people who have no care but could have care if people who should know better gave it to them.

I can’t write anymore. I hope this makes sense to you.

I understand your point and concede. Doctors should take Medicaid. On the other hand I’m just saying that they are in a pretty tough situation and private practice without insurance often allows them more freedom to try experimenting treatments. I had to Us gofundme to cover a lot of my medical costs. Have a friend who went to dr chheda on the west coast—appt cost 3000 everything included, no insurance period, apparently one of the best me/cfs docs. Had to crowdfund for that too, she’s not rich. Seems like there’s really no docs in this area that are good and take Medicaid.

 

[Mel9]

Yes. We would like to know more.

I don't want to seem: pushy here, and I understand the cautious approach of researchers like we have working to help us.

But something called a supplement might help us: we have people dying here. 60 years: depreciated here.

Why can't we discuss what they might be? Why is it a secret? Why would it dangerous to know, without studies yet- that a legal supplement that can be accessed might help?

Remember that researchers must act ethically. And that means they must not encourage sick people to try remedies until they’re sure they
a) work
B) are not harmful

 

[Rufous McKinney]

a) work
B) are not harmful

But they are already legal and available, therefore not likely to be harmful per se. (with exceptions of course)

 

[wigglethemouse]

They mention a website when they share data with reaserchers, does anybody know where? I want to attract new reaserchers to field.

@Seven (formerly lnester7) If you go to the OMF website at the top right there is a link for researchers. It takes you to this Stanford page. I think this may be the page you are looking for. It requires registration and authentication about being a researcher.
http://igenomed.stanford.edu/

 

[MonkeyMan]

ljimbo423 said:
All it would take is significant gut microbiome disruption, to start the process of ME/CFS.

That is what happened to our beloved family member.

And to me, by the way.

 

[i-lava-u]

I have been wondering about Marfans Bc I probably have cci, am tall and thin, and have Pectus excavatum. Not sure I totally meet the wrist signs tho and everything’s has been too much for me to handle to get evaluated for everything

That's really interesting, that you meet some of the Marfan criteria and likely have CCI.

What is really fascinating to me, is that there are more than 200 heritable disorders of the connective tissue. EDS has been in the spotlight with ME/CFS and CCI lately, but I wonder if there are others too, that may start popping up.

So sorry you have so much going on, it's really difficult to take it all in and then try to create a plan of attack. It can all be so overwhelming, that's for sure

 

[i-lava-u]

have been wondering about Marfans Bc I probably have cci, am tall and thin, and have Pectus excavatum. Not sure I totally meet the wrist signs

you might be interested in this...
https://www.marfan.org/dx/score

 

[toyfoof]

you might be interested in this...
https://www.marfan.org/dx/score

I took that a few days ago and I’m right on the verge. Some of the items you need imaging of your heart and vessels so unless you have that info, you’ll need medical help with the diagnosis. I’m still debating speaking to my doctor about it next week.

The organization that provides that website runs an annual conference (https://www.marfan.org/resources/patients/conference) where you can get diagnosed by experts and get help with next steps. What a very cool patient outreach! I’m tempted to try to go, but it’s coming right up and doesn’t leave much time for planning. Maybe next year.

 

[i-lava-u]

Thx for the conference info. @toyfoof that looks interesting. I wonder if they post the videos on youtube after? I would be very interested to watch it.

 

[stetson28]

What's the gene pattern of folks with obvious marfan's ? All they ever mention is fbn1, but obviously there would have to be a whole bag of heavy hitters to cause that many physical feature changes.