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

[Janet Dafoe]

Ashley Haugen - Whitney's caregiver

Ashley is Whitney's sister, not his caregiver. She did a lot of caregiving years ago, but not now. It was very hard on her and we want to let her have her life to live as normally as possible. She does an enormous amount - organizing the symposium almost single-handedly, social media, official photography of events and meetings, PR, advocacy, etc. She comes and helps Whitney when he's on ativan and does errands he requests of her, like get his alarm clocks fixed. She's awesome.

 

[i-lava-u]

You guys might be interested in this great thread started by Robert Phair, PhD

Yes, very interesting, I have been following that thread closely

 

[Sad Dad]

Ashley is Whitney's sister, not his caregiver.

I apologize. I knew that, and she said that. I just used too brief of a short hand for my summary, because she started out talking about what it was like when she was caring for Whitney. She is an amazing lady, as are you.

 

[anniekim]

Our assessment is about half of the patients have Ehlers Danlos syndrome.

Sorry I am not clear about the above. Is this Ron saying he believes half of patients with ME have EDS or half the patients Kaufman examined for CCI have EDS? Thank you.

 

[perrier]

Yes, that's quite a stark contrast to i-lava-u's post.

If Chris Armstrong's theory about ME/CFS starting in the gut is true though. Genetics might not have to play a big role in developing the disease, if any.

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.

 

[perrier]

Are you talking about one with ME/CFS and only one more with another illness? Or, is the one person, the one with ME/CFS? Sorry, brain fog...

I didn't "know" I had hEDS until diagnosed a few years ago, and I'm 42. I went to a Rheumatologist for joint pain. During the exam, he said "you are really flexible". He did an evaluation and I scored a 9/9 on the Beighton test. That, along with other clinical signs, made the diagnosis. Always, growing up, and now, my older sister and I were/are super flexible. I just did not know there was an actual name for it. After the diagnosis, and speaking to other family members, is when I found out that my grandmother is also the same way.

This is why these questions need to be asked, there may be a connection, but sometimes, it might not be something that jumps out at us, especially if certain things are "just part of who we are"

Also, certain genes die out over time (as we share 50% of genes from each parent, 25% from each grandparent etc.)

But, sometimes, genes pop up, after not being seen in a family for awhile. Like the random red headed cousin, where everyone else has brown hair. I am the only one in my family with curly hair. Genes are complex

Some of my health issues (including hEDS) were present before I developed ME/CFS (at 17) and some trickled in later on, as a consequence of it.

I got ME/CFS after a bad case of mono. I shared a soda with a friend. Why is it, that the person that I directly got mono from, had a mild case and completely recovered and I had a severe case and never got better?

Some women, develop ME after childbirth. Women have babies every day.

Life happens everyday, stress, illness...but, why do some of our bodies, around 1% of the world's population, go on to develop ME/CFS? That is the million dollar question

Dear I lava u,
I was not clear perhaps; only 1 person has come down with ME in our entire family. The only other illnesses that I can see are heart problems (not severe) in the very elderly. Diabetes in one case. Nothing else; lots of longevity and all the kvetching that comes with that, but robust health. Flexibility is, however, present. All the women are very flexible and even in old age. Hope I clarified things a bit.

 

[Rufous McKinney]

Life happens everyday, stress, illness...but, why do some of our bodies, around 1% of the world's population, go on to develop ME/CFS? That is the million dollar question

Given the vast nature of overlooked and undiagnosed illness: we have a long way to go there in understanding the history of family illnesses, trends, genetics, tendencies etc. It will be great to learn more on this topic.

 

[i-lava-u]

Speaking of genes.....and thinking about the metabolic trap hypothesis....

Here is an interesting article about epigenetics.
http://www.naturalhistorymag.com/features/142195/beyond-dna-epigenetics

Here is an excerpt:

"...When scientists talk about epigenetics they are referring to all the cases in which the genetic code alone isn’t enough to describe what’s happening—there must be something else going on as well. That is one of the ways that epigenetics is described scientifically: where things that are genetically identical can actually appear quite different from one another. But there has to be a mechanism that brings out this mismatch between the genetic script and the final outcome. Epigenetic effects must be caused by some sort of physical change, some alterations in the vast array of molecules that make up the cells of every living organism. That leads us to the other scientific way of viewing epigenetics—the molecular description. In this model, epigenetics can be defined as the set of chemical modifications surrounding and attaching to our genetic material that change the ways genes are switched on or off, but don’t alter the genes themselves...."

 

[i-lava-u]

Flexibility is, however, present. All the women are very flexible and even in old age

That's very interesting, especially because Dr. Davis stated, in the video, that about 50% of the ME/CFS patients they have tested, also have EDS.

Has your family member with ME/CFS or any other "flexible" family member been assessed for any types of EDS?

This is the Beighton test for hEDS (hypermobile EDS, which also happens to be the most common type) (other types are diagnosed with the help of blood tests)

Here is an exerpt from this website https://www.doctorrowe.com/do-you-have-joint-hypermobility-syndrome-start-with-the-beighton-score/

"...Using the Beighton Score, one point is assigned for the ability to accomplish each of the following movements:

1. Bending your small finger back further than 90 degrees (1 point each side)
2. Bending your elbow beyond a straight line (1 point each side)
3. Bending your knee beyond a straight line (1 point each side)
4. Putting your palms flat on the floor without bending your knees
5. Bending your thumb back to touch the front of your forearm (1 point each side)

When your Beighton score is equal to or greater than 5, then Benign Hypermobility Syndrome is diagnosed, a recognized disorder that affects about 5% of the population.

If your Beighton Score indicates you have joint hypermobility, you may not experience any issues. In fact, many don’t! But, if you are noticing other symptoms such as migraines, sleep problems, gastrointestinal problems, poor blood pressure regulation and more, then Ehlers-Danlos Syndrome or a hypermobility syndrome may be present..."

 

[ljimbo423]

In this model, epigenetics can be defined as the set of chemical modifications surrounding and attaching to our genetic material that change the ways genes are switched on or off, but don’t alter the genes themselves...."

My feeling is that epigenetics probably play a much bigger role in the onset of ME/CFS than genetics do. Just think about all the different ways the world has changed in the last 70-80 years.

Antibiotics were discovered and became used throughout the world regularly. The increase in the number of toxins is probably un-measurable, stress in much higher, junk food is everywhere, etc.

I think all these things and many others can create "epigenetic" changes in our bodies. Making us much more susceptible to chronic illnesses, including but not limited to ME/CFS.

I think epigenetic changes to our genes, from all these "toxic" changes is probably why there has been such a dramatic increase in chronic disease in the last 50 years or so- MS, Autism, Alzheimers and many, many more, I'm sure.

 

[Hopeful1976]

That's very interesting, especially because Dr. Davis stated, in the video, that about 50% of the ME/CFS patients they have tested, also have EDS.

Has your family member with ME/CFS or any other "flexible" family member been assessed for any types of EDS?

This is the Beighton test for hEDS (hypermobile EDS, which also happens to be the most common type) (other types are diagnosed with the help of blood tests)

Here is an exerpt from this website https://www.doctorrowe.com/do-you-have-joint-hypermobility-syndrome-start-with-the-beighton-score/

"...Using the Beighton Score, one point is assigned for the ability to accomplish each of the following movements:

1. Bending your small finger back further than 90 degrees (1 point each side)
2. Bending your elbow beyond a straight line (1 point each side)
3. Bending your knee beyond a straight line (1 point each side)
4. Putting your palms flat on the floor without bending your knees
5. Bending your thumb back to touch the front of your forearm (1 point each side)

When your Beighton score is equal to or greater than 5, then Benign Hypermobility Syndrome is diagnosed, a recognized disorder that affects about 5% of the population.

If your Beighton Score indicates you have joint hypermobility, you may not experience any issues. In fact, many don’t! But, if you are noticing other symptoms such as migraines, sleep problems, gastrointestinal problems, poor blood pressure regulation and more, then Ehlers-Danlos Syndrome or a hypermobility syndrome may be present..."

This is really useful for us who don't know about EDS. Appreciate it, thanks.

 

[Gingergrrl]

I currently am convinced all these various things are really all related things.

I agree and I can no longer see any scenario where all of these illnesses are not inter-related. When I used to post on two private mast cell (MCAS) groups, almost every single person, I mean almost 100% of the people, also had POTS. And a good percentage had the trifecta of POTS/ MCAS/ and EDS. It was beyond any level of sheer coincidence.

Ashley is Whitney's sister, not his caregiver. She did a lot of caregiving years ago, but not now. It was very hard on her and we want to let her have her life to live as normally as possible. She does an enormous amount - organizing the symposium almost single-handedly, social media, official photography of events and meetings, PR, advocacy, etc. She comes and helps Whitney when he's on ativan and does errands he requests of her, like get his alarm clocks fixed. She's awesome.

Ashley is such an impressive young woman to have been a caregiver for her brother in addition to all of the advocacy that she has done. I also have an amazing sister and am very blessed.

 

[i-lava-u]

This is really useful for us who don't know about EDS. Appreciate it, thanks

No problemo

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)
https://www.marfan.org/about/signs
https://www.marfan.org/about/related-disorders

Here are some other visual signs, that the attached links do not mention

 

[Hopeful1976]

No problemo

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)
https://www.marfan.org/about/signs
https://www.marfan.org/about/related-disorders

Here are some other visual signs, that the above link did not mention
View attachment 32955

Thanks! I don't have either of these or the others you posted....

 

[frozenborderline]

The truth is, if you have a Medicaid type insurance, you would have to fight to even be a patient since he won’t take your health insurance as the poor are not welcome in his space!

I have dr Lynch as a doctor and find him to be very compassionate. Unfortunately the situation with insurance is that doctors who treat me/cfs have to use experimental treatments that they generally have to fight w insurance to cover all the time, and fighting with insurance is not the best use of their time. Also it tends to get them more scrutiny. Medicaid Is probably worse in this regard. Most ME/CFS specialists have stopped taking insurance altogether for this reason. Dr Lynch’s office takes more types of insurance than almost any me/cfs specialist. They take Medicare I believe. They also advocate for people for disability benefits as well as other stuff (like they got me a disability access pass for the national parks so I can avoid mold easier. ). Blame the NIH/insurance companies for the situation, not individual doctors. Btw for anyone else reading I would highly recommend Darren lunch as a doctor.

 

[Laurie P]

Blame the NIH/insurance companies for the situation, not individual doctors.

I am severely ill and bedridden. The only time I have left my home in over a decade has been by ambulance to go to the ER and you’re talking to me about National Park passes!

I don’t know how much longer I can go on like this or what will happen to me when one of my sick and disabled elderly parent’s dies.

There is no reason that I, and others who have also been forced to leave this medical office, couldn’t have continued as patients and had the services that Medicaid does pay for to at least have had some medical care, support and help with our disability cases.

This office doesn’t get a get out of blame free card because others are to blame too. My life isn’t expendable because they don’t want to do the Medicaid paperwork! They of all people, knowing the severity of this disease should know better! The same goes for any other “expert”. I don’t care who they are. My life isn’t worth less than anyone else’s life because I’m poor.

 

[frozenborderline]

am severely ill and bedridden. The only time I have left my home in over a decade has been by ambulance to go to the ER and you’re talking to me about National Park passes!

I haven’t stood up in six months and have to crawl to the bathroom. I can only travel being on a mattress in a van illegally, so that I am not sitting up at all. The national park passes isn’t because I’m vacationing for fun, but because I’m so reactive to mold my house will kill me if I stay, and I react to most housing and hotels.
They do lots of work on disability and other access issues for people too. If you know of many me/cfs doctors that take Medicaid , I would be surprised.

 

[JES]

At this time stamp of the video Ron Davis talks about the possibility of using supplements to cover certain deficiencies. He mentions they are supplements that can be bought from the pharmacy, but he thinks nobody has tried them. I wonder what research this could be related to, in any case it would be interesting to hear more about this.

 

[Seven7]

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

 

[Rufous McKinney]

and fighting with insurance is not the best use of their time.

and or: they just won't do it. The only reason my doctor TRIED was: I showed up in person and didn't leave: how is my Preauthorization going?

After i witnessed that waste of his time: I now get why its Insurance Broken.