P2P workshop Dec. 9 & 10, 2014

[Nielk]

(Slides back)
oxidative stress turn inflammatory molecules that influence auto anti bodies.

Autoimmunity altered by genetic factors either positively or negatively.

Probiotics could influence the micro biome and prevent disease - with brain dysfunction.

 

[Nielk]

Many studies have been done with microbione for mecfs.

Wide look at triggers iof immune dysfunction. Immune markers. Auto anti bodies.

Looking for many pathogens. Herpes viruses, retro viruses. Found very little found in serum.

Montoya samples found very little in pAthogens.

 

[dancer]

Could much LOWER level of Annellovirus in ME/CFS patients be playing a role? (Horning/Lipkin research)

 

[Nielk]

Early in the studies - 3 years or less finds more immune markers.

 

[Nielk]

Would treating il 17 early in the disease be successful?

 

[Hope123]

153 people watching online

 

[Nielk]

Question from panel member.

We're dr. Natelsons studies included in review? Answer - no, they were excluded.

 

[melamine]

Who are these people? I've never heard of anyone except for Hornig and Vernon, and Vernon has an iffy track record as far as supporting real research.

Who are they? I can only comment on one, Benjamin Natelson, who is attached to one of the hospitals in NY. I will preface by saying that I have a decades-long history of post-viral CFS (with encephalitis), followed about 18 years later by a degenerative period that is even more consistent with ME. Most of my symptoms were directly associated with infections or other medical events and definitive points in time.

Dr Natelson is involved in a CFS study that sounded decently useful, so I went to see him last June for the purpose of being evaluated for inclusion in it. I offered to provide any of the many test results I've had in recent years, including those demonstrating chronic immune abnormalities. None were requested and no more than a superficial history was taken, after which Dr Natelson told me I was excluded. Based on?.....too many symptoms? Too many complications from long-standing neglect?...He didn't say directly, but recommended psychotherapy after giving me a dose of the usual - though shocking in this instance -"When did you go on disability, what were you doing before that, why haven't you been working", etc. Zero interest in critical - medical - aspects of my history.

 

[Forbin]

Could much LOWER level of Annellovirus in ME/CFS patients be playing a role? (Horning/Lipkin research)

Since high levels of anellovirus are seen in immune suppression, I've wondered if the low levels in ME/cfs reported by Lipkin might be a marker of an immune system in high gear.

 

[dancer]

One of the P2P panel members asked if Dr. Natelson's studies (which he shared today) were included in their review. Nope, they were excluded (she can't remember why).

 

[Nielk]

Pediatrics were excluded why? Is it bc there wasn't enough?

No. It was not in the charge.

 

[Nielk]

Ongoing studies have any preliminary results in the review?

No -

 

[Nielk]

Natelson remarked that they are looking for bed bound patients in NY to include in their study.

They will come to your house!

 

[Nielk]

How long between test and retest of patients on exercise testing?

Longer than three months but not sure.

 

[dancer]

Hooray for Lenny Jason! He's asking good pointed questions. "Why do patients report CBT and GET to be NOT helpful in contrast to the summary of good results you've reported on?" etc.

 

[Nielk]

Jason- tremendous disreprency of CBT reported on trial and patient reports.
Questioning standards of PACE trials.

 

[Nielk]

Smith -

Great question. Mixed results in trials of CBT. The combination showed positive results. Why patients report differently is explained well.

We have seen that counseling showed improvement but not cure.

 

[Hope123]

Dr. Natelson is trying to recruit more severely affected patients - esp. bedbound/ homebound -- and it sounds like they are trying to make home visits. So for those in the NY/ NJ area or if you know people/ support groups in those areas, here's his contact info:

http://www.painandfatigue.com/dr_natelson.html

 

[Sing]

Does anyone have a link to make comments today? Yesterdays doesn't apply today. Thanks

 

[Nielk]

Natelson-

There is a difference between UK study outcomes and US.