Dr Nath's intra-mural study at NIH is currently recruiting

[Never Give Up]

Last line of the article:

"If I come back for part two of the study in about year, maybe I'll get to meet my mouse," Vastag said.

Too funny! Thank you for allowing yourself to be photographed and interviewed. I know my son would never agree to that. I'm not sure if it was you or the NIH who arranged for this great national coverage, but it is wonderful exposure. It will help educate the country about the seriousness of the disease and help later findings make a bigger social impact. Thank you, responsible one.

Edited to add: I just noticed a video in the middle of the article which appears to be about the release of the IOM report. In it a rheumatologist says that CBT and exercise can be effective treatments. She'll learn, someday, someday.

 

[RYO]

NIH Study Takes the Deepest Dive Yet Into Baffling Condition
by Maggie Fox



http://www.nbcnews.com/health/healt...s-deepest-dive-yet-baffling-condition-n754271

@viggster
That tilt table experience reminded me of "scientific crucifixion". It wore me out. Luckily that was no pre flogging!! I can't say enough how genuinely nice the nurses were.

 

[Valentijn]

@RYO and @viggster - Since Leorey Saligan and and Brian Walitt seem to be part of the clinical side of the study, were they involved at all with you as patients thus far? If so, were there any problems or awkwardness? I'm a bit curious, since they're both rather controversial figures due to their past statements about CFS and Fibromyalgia.

And thanks for sharing your experiences. It's very reassuring to hear that they're taking things seriously!

 

[viggster]

@RYO and @viggster - Since Leorey Saligan and and Brian Walitt seem to be part of the clinical side of the study, were they involved at all with you as patients thus far? If so, were there any problems or awkwardness? I'm a bit curious, since they're both rather controversial figures due to their past statements about CFS and Fibromyalgia.

And thanks for sharing your experiences. It's very reassuring to hear that they're taking things seriously!

I'm hesitant to answer, given how Dr. Walitt became a target of a lot of criticism that shaded into harassment (in my mind - no one has said that to me). But in the interest of openness I'll say that yes, I have had a lot of contact with Dr. Walitt and he has been a fantastic, sympathetic, empathetic physician. He wants to understand this illness and he has a whole other job here. I have gotten *zero* indication that he thinks this is a psychosomatic condition. He is helping run patients through a heavily biological study and he has spent a lot of time listening to how this illness has impacted my life. And he's doing two jobs now; being involved in this study is extra work for him. It's a problem because there needs to be a dedicated ME/CFS research team, but NIH is bootstrapping things here. They did hire a nurse and a patient coordinator and I think one other person for the study. I have not seen Dr. Saligan at all.

 

[viggster]

Inhaling insulin? That's one I haven't heard of. @viggster is that helping you?

Since I started it about 6 months ago, my brain has improved quite a bit. So has the general exhaustion. I'd say it's been the single most helpful intervention I've tried in five years. It's being studied in early Alzheimer's in a trial called SNIFF. You can read about it on the Lost Falco website - he's a mind hacker guy. About 15 years ago, some scientists discovered inhaled drugs do not really get into the peripheral blood, only the brain. So snorting insulin does not affect peripheral blood sugar. http://www.lostfalco.com/intranasal-insulin/

 

[RYO]

@RYO and @viggster - Since Leorey Saligan and and Brian Walitt seem to be part of the clinical side of the study, were they involved at all with you as patients thus far? If so, were there any problems or awkwardness? I'm a bit curious, since they're both rather controversial figures due to their past statements about CFS and Fibromyalgia.

And thanks for sharing your experiences. It's very reassuring to hear that they're taking things seriously!

I would reiterate the experience of @viggster. Dr Walitt spent probably 5-6 hrs obtaining what can best described as a "life history". I never had any interaction with Dr. Saligan. None of the interactions with Dr Walitt were awkward. He has been very helpful overall. He is aware of the concerns expressed about his involvement in this study.

I tend to agree with Dr Nath. A well designed study will not be materially affected by a biased individual.

I believe this has been and will likely continue to be a learning experience for researchers and participants.

I am glad I was able to share my experience as a physician struggling with this illness. It was therapeutic to tell my story to those I felt were genuinely interested. I gave feedback when I felt it was appropriate and it was well received.

I would also add that I was especially grateful to the Chaplin intern Shannon who came to visit me twice during my stay.

It made me think about how this study could serve as the basis for multidisciplinary team approach in diagnosing and support of ME/CSF patients.

 

[Solstice]

I'm hesitant to answer, given how Dr. Walitt became a target of a lot of criticism that shaded into harassment (in my mind - no one has said that to me). But in the interest of openness I'll say that yes, I have had a lot of contact with Dr. Walitt and he has been a fantastic, sympathetic, empathetic physician. He wants to understand this illness and he has a whole other job here. I have gotten *zero* indication that he thinks this is a psychosomatic condition. He is helping run patients through a heavily biological study and he has spent a lot of time listening to how this illness has impacted my life. And he's doing two jobs now; being involved in this study is extra work for him. It's a problem because there needs to be a dedicated ME/CFS research team, but NIH is bootstrapping things here. They did hire a nurse and a patient coordinator and I think one other person for the study. I have not seen Dr. Saligan at all.

Let's hope for the best then, and for him to see the folly of his earlier ways. I'm still not at ease with him being there, but if things are set up right we should get good results. And if we do get good results it should convince him too.

 

[viggster]

Learned another tidbit today that's encouraging. The team is planning to start to bring back patients for part 2 - the exercise/PEM part - starting in August. They're figuring out how to have two patients in the hospital simultaneously, one in part 1, one in part 2. And they may hire another person. That will be the fifth person hired for the study if it happens. They also want to add a muscle biopsy.

 

[Emily L]

So cool! Thanks for sharing @viggster!

 

[Never Give Up]

Learned another tidbit today that's encouraging. The team is planning to start to bring back patients for part 2 - the exercise/PEM part - starting in August. They're figuring out how to have two patients in the hospital simultaneously, one in part 1, one in part 2. And they may hire another person. That will be the fifth person hired for the study if it happens. They also want to add a muscle biopsy.

That's great! What will they do with the muscle biopsy?

 

[Tuha]

Do they plan to share preliminary results from different parts of the studies? I mean for example they said that the first phase can take 3-5 years. I know that the science works slowly but this is really frustraiting for the patients. Look for example at CDC CFS studies. They take already 5 years and we dont know anything about - it´s very frustraiting for the patients especially in our case when so little is known about CFS.
I like for exaple what is prof. Davis doing. He informs us time to time about what he is doing, about preliminary findings and so on. This is also good for marketing and making a good relationship. I think you can inform about what you are doing without saying too much.

 

[viggster]

That's great! What will they do with the muscle biopsy?

They're not entirely sure. The scientist running the Seahorse mitochondria machine sounded excited about running muscle cells through it. (She's now doing lymphocytes.) Part of the issue with fishing expeditions is that it helps to know what the fish look like and where they are. With muscles cells, I guess they can do gross histology (look at them under a microscope) and see if anything looks weird. Beyond that, I'm not sure what they'll come up with. They have carte blance to add experiments, and there are world experts in weird muscle diseases at NIH (one of whom I met), so I hope they learn something important from it.

 

[viggster]

Do they plan to share preliminary results from different parts of the studies? I mean for example they said that the first phase can take 3-5 years.

See my response #126 on this thread.

 

[Valentijn]

With muscles cells, I guess they can do gross histology (look at them under a microscope) and see if anything looks weird. Beyond that, I'm not sure what they'll come up with.

They could also use muscle biopsies to test for mitochondrial DNA mutations which can cause myopathies. Due to the heteroplasmy of many such mutations, they can cause adult onset of genetic diseases, as well as a sporadic pattern of a variety of symptoms and severity (or no symptoms at all) in maternal relatives.

Histology would also pick up alterations caused by a genetic mitochondrial myopathy, though probably not the cause. And muscle biopsies can also be used to check for metabolic abnormalities (though I don't recall the details) and can indicate electron transport chain deficiencies (eg, Complex I).

 

[Cort]

I'm at NIH (day 2) and just learned an interesting tidbit. The nursing institute (National Institute of Nursing Research) has a symptom management team. Well I'm sure just that name makes alarm bells go off for many ME/CFS patients. BUT, the scientist on that team working on the ME study is running our fresh blood through a machine called Seahorse. The machine compares real-time mitochondrial function of two samples - in this case, ME/CFS patient vs age-matched control. The team is also working on cancer + chemo + radiation fatigue, looking for the basis of that and what can be done about it. Already after 3 ME patients here at NIH, they have seen big, big differences in oxygen consumption and mitochondrial function, both 'at rest' and in response to a drug challenge. The researcher was excited to see such a big signal of impaired mitochondria in such a small sample already.

Edit: Here's info on the Seahorse technology. http://www.agilent.com/en-us/products/cell-analysis-(seahorse)/how-seahorse-xf-analyzers-work

Very exciting! From what I've heard Seahorse is the latest technology. Isabel Barao is using in an SMCI study as well. Good for them.

 

[BurnA]

Welcome back Cort.

 

[Ritto]

Hey, Cort.

 

[viggster]

Just learned that NIH is adding skin & muscle biopsies to the intramural study. This is good news...it shows they have flexibility to adapt as they see more patients and get a deeper understanding of the problems patients have.

 

[Gemini]

Just learned that NIH is adding skin & muscle biopsies to the intramural study. This is good news....

Really good news!

Long timers {like me} remember past interest in muscle biopsies; thus a few months ago I posted this :

"Research in 1991 from London considered persistent virus infection in muscle:
Persistent virus infection of muscle in post viral fatigue syndrome
https://www.ncbi.nlm.nih.gov/pubmed/1665379

and again in 2003 from Imperial College, London associating "enteroviruses" with muscle dysfunction:
Enterovirus-related metabolic myopathy: a post viral fatigue syndrome
https://www.ncbi.nlm.nih.gov/pubmed/14570830

CONCLUSIONS:
There is an association between abnormal lactate response to exercise, reflecting impaired muscle energy metabolism, and the presence of enterovirus sequences in muscle in a proportion of CFS patients."

Will be looking forward with interest to NIH's findings.

 

[Groggy Doggy]

Just learned that NIH is adding skin & muscle biopsies to the intramural study. This is good news...it shows they have flexibility to adapt as they see more patients and get a deeper understanding of the problems patients have.

Great news!! NIH is stepping up to the plate! Thanks for all the advocacy work you do!