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

[Janet Dafoe]

This panel and Q&A is long but really good and worth watching. Important info not shared before. Ron Davis, Ashley Haugen, Dr Darren Lynch (Wow!), Rivka Solomon. Ron and Darren were like a tag team. I hope the can work together on something. PWME in Western Mass are lucky to have him.

 

[Remi]

Thank you, Janet!

I watched Ron Davis his talk, but the panel was too long. If anyone can tell me where Ron Davis talks about CCI or what he says about it, that would be great!

 

[valentinelynx]

Thank you, Janet!

I watched Ron Davis his talk, but the panel was too long. If anyone can tell me where Ron Davis talks about CCI or what he says about it, that would be great!

In another thread @Silencio said, "Here is a transcript starting around 1:04 in the video:

Ron Davis: “We work with a physician in the Bay Area, David Kauffman, he comes to our meetings. He is the physician who had the patient who had the fusion in his spine (aka Jeff), the technical terms I’m not gonna be able to do (ie. CCI, AAI), who feels that that person got better. I think that probably what happens is that the head drops down too far and the spine sort of penetrates into the brain that causes a lot of problems. That’s probably caused by Ehlers Danlos syndrome. That is our guess. I’m walking with a cane because I have Ehlers Danlos syndrome and my knees are totally wearing out but I don’t want to take the time to get them replaced.​

​

So what fraction have it, I asked David about this. He said “I don’t think it’s the cause of the disease, but I think it adds to a lot of the symptoms”. He’s evaluated a number of people who he’s pretty convinced do not have that, although they could develop it because of flexibility problems. Our assessment is about half of the patients have Ehlers Danlos syndrome. So for some reason it’s causing a connection to the disease. And it’s also possible that they develop Ehlers Danlos syndrome because of the disease (meaning ME), we don’t know that for sure.”​

 

[Grigor]

Thank you for posting the small bit of transcript. Very interesting!!!

 

[Remi]

Thank you, @valentinelynx!

 

[roller]

So what fraction have it, I asked David about this. He said “I don’t think it’s the cause of the disease, but I think it adds to a lot of the symptoms”. He’s evaluated a number of people who he’s pretty convinced do not have that, although they could develop it because of flexibility problems.

Our assessment is about half of the patients have Ehlers Danlos syndrome. So for some reason it’s causing a connection to the disease. And it’s also possible that they develop Ehlers Danlos syndrome because of the disease (meaning ME), we don’t know that for sure.”

what exactly are they saying ?

• CCI is not cause of MEcfs
• CCI/AAI "adds" a lot of the symptoms to ME
• MEcfs may cause CCI/AAI
• 50% of pwMEcfs may have EDS
• ME may cause EDS
  
  anything wrong or missing ?

 

[ljimbo423]

I find it incredibly interesting that Ron said this. My feeling is the same, that all these illnesses have the same basic core issue.

At 2:04:30

Question- Fibromyalgia and ME, what's the difference?

Ron Davis- My guess is they are the same thing, I think fibromyalgia, chronic fatigue syndrome, chronic Lyme disease, Gulf War Syndrome, pans are probably all the same thing.

So I think they present just a little bit different but I suspect it's exactly the same thing.

 

[Sad Dad]

Not to take anything away from all of the great presenters, but I'm assuming if you're on this forum, you know a fair amount about ME/CFS. Therefore, if you want to skip to the research parts of the presentation, here's my outline of the video:

Intro 0:00 - 14:15 (Optional)

Ron Davis
General remarks 14:15 - 20:30 (Optional)
Research 20:30 - 26:30

Darren Lynch - Clinician
General remarks 27:50 - 34:00 (Optional)
Treatments 34:00 - 35:10

Ashley Haugen - Whitney's sister and previous caregiver
General remarks 36:10 - 41:60 (Optional)

Rivka Solomon - ME/CFS Advocate
General remarks 42:20 - 49:10 (Optional)

Questions
Important
55:24 - 59:44
1:03:50 - 1:05:50
1:07:55 - 1:15:41
1:26:05 - 1:32:35
1:34:20 - 1:39:35
1:40:10 - 1:54:23
1:59:10 - 2:02:05

 

[i-lava-u]

@Janet Dafoe (Rose49)

This panel and Q&A is long but really good and worth watching

I watched this and one thing that stood out above everything else is that Ron stated that he has EDS. In my opinion, there just has to be some kind of a genetic connection with an outside insult that "switched on" ME. Also interesting is he mentioned he believes ME, GWS, PANS and FM could be the same thing presenting in different ways.

I find it very interesting that there are a lot of diseases that like to hang out together, so maybe the net should be cast a lot wider. For example, it is common for someone that has asthma to also have eczema. They are friends that like to hang out.

ME, POTS, MCAS like to hang out together. One person may have one, another multiple. There is a lot of talk recently about EDS and CCI. This may be a puzzle piece for some patients, but not all....


Here is a snapshot of my dad's side of family:

My paternal grandmother has hEDS, MS, sensory issues, allergies, crohn's disease (and other health issues)
She has 2 children.

-My father has crohns disease

*My oldest sister has hEDS, scoliosis, sensory issues and 2 years ago started having ME like issues after a severe infection (PEM and OH)
-Her oldest son has asthma, allergies, eczema and vocal/physical tics
-Her next son has vocal/physical tics, allergies, depression
-Her youngest son has sensory processing disorder

*My next sister has anxiety and OCD tendencies
-Daughter completely healthy
-Son has a information processing learning disability, eczema, allergies

*Myself - ME/CFS (after mono) chronically reactivated EBV, psoriasis, allergies, hypoglycemia, POTS, nOH, hEDS, MCAS issues, sensory issues, spinal issues, OCD tendencies etc. etc.
-First son OCD, depression, anxiety, scoliosis, vocal/physical tics etc.
-Second son depression and vocal/physical tics, eczema

*Younger sister allergies
-First daughter completely healthy
-First son completely healthy
-Second son sensory processing disorder, Autism spectrum
-Second daughter completely healthy

-My dad's sister has MS and recently diagnosed with breast cancer
*Her daughter (only child) has eczema, allergies and celiac disease


I think researchers should not only be looking at the patient, but also looking into family history of patient. I think there may be some clues hiding in plain sight....

 

[Laurie P]

I shouldn’t be straining to write but I need to vent!

At 31.33 minutes, Dr. Lynch starts talking about his slide “Basic Clinical Management”.

1. Validate the patient’s experience and educate about the disease.

Dr. Lynch says, “They don’t have to feel like they have to fight for the existence of their illness in my space.”


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!

Number 1 should be, accept the person’s health insurance so that they can even be a patient in your space.

I was a patient in this office a long time ago with a different doctor. I was primarily homebound at the time and unable to work or attend college. The health insurance I had was running out, I couldn’t afford new health insurance, and when I inquired as to whether they took Medicaid should I be able to get benefits, I was told to my face and with tears rolling down my cheeks, “No”, and furthermore, that they didn’t take Medicaid because they had taken a vote and decided not to take Medicaid because they didn’t want to do the paperwork! I was additionally told that since I was already a patient, they would give me a 10% discount, but that was of no help to me since I couldn’t afford the other 90%.

Also, I don’t know if it’s still true now or not, but when I needed my records for my disability case, they would only release lab work, and not the notes from all of my visits, leaving a terrible gap in my records. Furthermore, a friend of my mine who used to go to this office (when my friend had the “right” insurance), and was seen by Dr. Lynch, would have to pay out of pocket for them to fill out disability paperwork.

I’ve been sick for 36 years. I’m severely ill now, have been bedridden for over a decade and I have no medical care. Had their vote gone the other way, and had I been able to continue as a patient and had thorough records released when I needed them for my disability case and re-evaluations, it would have made a huge difference in my life and circumstances now.

Moreover, I might not be as severe now and maybe I could have even attended the Hampshire College screening which was only about 15 - 20 minutes away from where I live!

@Janet Dafoe (Rose49), if Ron wants to study another severe patient in collaboration with Dr. Lynch, I’m available, but Lynch would have to actually take me as a patient! My friend, who is mostly homebound, is also available!!!

 

[wigglethemouse]

I think researchers should not only be looking at the patient, but also looking into family history of patient. I think there may be some clues hiding in plain sight....

@i-lava-u You may be interested in last weeks OMF May momentum post about one of the researchers working at Stanford with Ron Davis who is running the family study.
https://www.omf.ngo/2019/05/22/fereshtehs-maymomentum-story/

More about the family study here in a 2017 article - see section "Major study underway"
https://www.healthrising.org/blog/2...-explored-open-medicine-foundation-symposium/

 

[Rufous McKinney]

I’ve been sick for 36 years.

This is so wrong.

Once upon a time, and long ago, somebody invented a bear trap. A simple device, a couple of pieces of metal, a jagged edge, and spring. Thats it for you, bear. Occassionally the might chew their own foot off and be freed, not very fun, I imagine.

Many Many Years later: somebody invented a Medical System, profit based, in the United States.

Pretty much: we have to chew our own foot off: to be freed.

Its clear: a class system is well established: insurance or government funded health care cannot acccess the: innovative, the competent. They just refuse to take insurance.

 

[Rufous McKinney]

I find it very interesting that there are a lot of diseases that like to hang out together, so maybe the net should be cast a lot wider. For example, it is common for someone that has asthma to also have eczema. They are friends that like to hang out.

This whole post is quite interesting, thank you for including, @i-lava-u . I currently am convinced all these various things are really all related things. Thats why the recent progress is so exciting. Even if its: perterbed our theories a bit.

Wanted to just share that given my grand lifetime mess here .....(figure the whole life)...my 36 year old daughter has ONLY exhibited: mild ashma; too many ear infections as a baby I blame on me delivering my crappy immune system to her via birth and breastfeeding; she gets occassional hive outbreaks from suspicious foods; and she has a very mild scoliosis. She was able to be the star Water Polo Goaly, and Phi Beta kappa.

I am so very greatful. And now wish to say this: she did not recieve the VACCINE SCHEDULE. What if she had?
She received: TWO. Polio at 1, and a MMP thingy at 7 (which we should not have done, she was sick) (see, doctor pushing shots when a child is sick is WRONG). She got a tetanus shot as an adult, her choice.

I sure wish they' d look at the vaccination assaults and schedule and aluminum dose.

 

[ljimbo423]

I think researchers should not only be looking at the patient, but also looking into family history of patient. I think there may be some clues hiding in plain sight....

Great post! Clearly there are some major connections, to so many of your relatives having all these same/similar illnesses.

 

[perrier]

Great post! Clearly there are some major connections, to so many of your relatives having all these same/similar illnesses.

Yes, it is interesting to see family connections; however, in our case, not a soul has this illness or any other illness (except heart conditions in old age) except for one person.

 

[i-lava-u]

thx @wigglethemouse I will look at the links you posted. I am glad to see there are some researchers looking into family/genetic links.

I was part of a clinical research study a few years ago at the University of Utah with Dr. Alan Light and
Dr. Kathleen Light and they did ask a lot of questions about family history, but, only because it was essential for that particular study (Novel Gene Variants in FM and ME/CFS Study).

I have been part of multiple ME clinical research studies and this is the only one that asked about family history.

 

[ljimbo423]

Yes, it is interesting to see family connections; however, in our case, not a soul has this illness or any other illness (except heart conditions in old age) except for one person.

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.

 

[i-lava-u]

Yes, it is interesting to see family connections; however, in our case, not a soul has this illness or any other illness (except heart conditions in old age) except for one person.

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

 

[ljimbo423]

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

Or multi-million dollar question! It's the big one for sure....

 

[Janet Dafoe]

You guys might be interested in this great thread started by Robert Phair, PhD, who is working with Ron and came up with the metabolic trap hypothesis. There is a lot of explanation about the genetics of ME/CFS in the thread, why some people get this disease and others don't, as well as lots of explanation of the metabolic trap, progress on it, and responses to patients' questions and ideas. It's so good.

https://forums.phoenixrising.me/threads/the-ido-metabolic-trap-guy.62727/