Group Letter for Dr Donnica re Oz show

[jackie]

hope that she mentions possible initial viral-onset of disease, in listing progression - as others may recognize this as their onset.

Also the "gastro" symptoms (abdominal pain, nausea - waxing/waning) that many of us experience - so often we sometimes take them for granted!

These are different from true IBS (although lots ALSO have IBS) - this may be from the viral component such as Enteroviruses, etc.

Maybe these were listed and I just didn't see them - sorry if I'm repeating!

jackie

ps just read Dr. Donnica's post...re: transmissibility (I'm talking ME/CFS NOT XMRV here!) I wholeheartedly agree with cautious wording here.....all I can offer is what MY doc keeps telling me over and over: usually if more than one family members has cfs it's because they caught it from the same initial viral SOURCE (at the same time)....not from each other (stress the word USUALLY! jury is out on this one!)

Two people drink, maybe water for example w/virus (maybe enterovirus)...one gets immediately sick (genetic predisposition and altered immune response) one is ok as immune response is healthy and fights off virus - maybe it's that simple?

Perhaps the initial virus never goes away (without aggressive treatments of some kind - either to correct immune disfunction or suppress viruses, possibly?) in either person....so that might account for the time lags in appearance of symptoms/disease.....could be it's all about the TH1/TH2 responses. I may be biased as my treatment consist of long term antivirals. Oh, never mind.

Yikes! I'm supposed to BENCHED and resting with my Blankie!....and NOT "talking"

jackie

 

[MEKoan]

Many thanks to Dr Donnica!

 

[DrDonnica]

Great input!

1)Description of severe cfs/bedridden individuals.
2)There have been reported/ documented outbreaks of CFS ( example Tahoe)
3) horrible response/ attitude by CDC/ horrible funding
4) difficulty in proving disability to the Social Security administration leading to destitution.

Thanks to all for the great input! I started making prioritized notes for the segment which I will send to the producers prior to the segment.

 

[jackie]

Rats...I forgot to say THANK YOU! DR.DONNICA!, too!

jackie

 

[DrDonnica]

Thanks for the input!

things I'd like included:

>CFS bad name, like calling Parkinson chronic shaking

>NOT= normal fatigue, extremely debilitating (he could poll the audience - how many tired? then say something like "now magnify that by 100 and add the worst flu and 100 odd other symptoms and you'll have some idea") ok ok I'll back off

PWC want to exercise but cant. If try will pay for it with PEM knocked out anywhere from hours to days to weeks to months if overdo

People who are depressed can exercise, but dont want to. If they do, they will feel better.

I think this is a nice clear sound bite people can get it we cant exercise or do more. If we do we get sicker, not better.

islandfinn

LOVE these examples & I copied them directly into my notes! Particularly the Parkinson's idea. This is what I need: short illustrations/metaphors that people can understand.

 

[DrDonnica]

Thanks for understanding the "background" for tv production Koan! You were right on point. If I get to make 3 important points on Friday, I will consider that a huge "win".

 

[fresh_eyes]

Yay Dr Donnica! I'd love to see info on the show about what further XMRV research is in process (perhaps this past Wednesday's meeting at the Cleveland Clinic would be a source for this info?), and what the time frame is - when we will know more.

And thank you. You're a hero. Shall we start lobbying Oprah next?

 

[MEKoan]

If I get to make 3 important points on Friday, I will consider that a huge "win".

So will we Dr. D, so will we!

We will be rooting for you!

with gratitude and, dare I say it, LOVE!
Koan

 

[Dreambirdie]

Dr Donnica--Please include the quote that Nancy Klimas gave in a Q & A with the NY Times, where she spoke about her HIV patients being a hale and hearty bunch, while her CFS patients were doing much more poorly--due to the lack of money for research. And then she said... (I can't find the article, but maybe someone can--I am fried today), so I will paraphrase: IF I HAD TO PICK BTWN HAVING HIV OR HAVING CFS, DURING THIS TIME AND WITH THESE CIRCUMSTANCES, I WOULD PICK HIV. (WOW! That is one powerful statement.)

 

[cold_taste_of_tears]

And this!

Can someone tell Donnica to tell the world this please?
Quotes from British Practice Nurses on CFS/ME in 2009!!!!

'If all those come back normal [investigations] well, I don't know what they call them. They probably call them lazy fags... they probably classed as a waste of space... because [pause] people probably just look at them and think, oh you know he's just tired all the time: lazy...lazy bastards and wasting doctor's time.' (PN29)

Incredible huh?

BMC Nursing 2009, 8:2doi:10.1186/1472-6955-8-2
Available online at: http://www.biomedcentral.com/1472-6955/8/2

Don't forget Simon Wessely who runs the CFS/ME world in the UK.

The description given by a leading gastro-enterologist at the Mayo clinic remains accurate. 'the average doctor will see they are neurotic and he will often be disgusted with them.'

Source: Wessely S : Chronic fatigue and myalgia syndromes",
in N. Sartorius et al (eds), 'Psychological Disorders in General Medical Settings', publ. Hogrefe & Huber, 1990.

 

[DrDonnica]

Cyberthanks!

The points she made on GMA in order and in response to questions. All points made with emphasis and urgency.

67% with severe CFS have XMRV
dont know if causal or coincidence or piggyback or red herring
there is a biologic basis for CFS - no more depression, etc.
not the first piece of evidence
susan verson called a game changer
now what needs to happen more research from NIH CDC needs to get on it
like the other well known retrovirus HIV
retrovirus integrates into host cell DNA and is forever unless treated with anti retro
we know HIV can be passed to child in breast milk
virus in bodily fluids
dont know how transmitted
in prostate cancer
people do not ordinarily give it to family members
there have been outbreaks - dont know why this is
are there more than one virus?
MUCH MORE RESEARCH NEEDED
Dont know if can be passed down other than from mother (fielding grandparents question)
WPI family has daughter WCFS, very philanthropic
WPI private funds & Nevada
Cleveland clinic, NCI involved
WE need CDC to see this is at least as important as swine flu
Need to reproduce studies
Find out how transmitted
Need to develop a blood test

Thanks Koan for this excellent summary of my second GMA Health segment! I also did a segment on CFS in general just two few weeks before that, ironically and coincidentally, just a few days BEFORE the Science paper came out on XMRV. In large part because this and more importantly because of people sending emails to the GMA Health producers thanking them for the initial segment, they allowed me to do the 2nd segment on the XMRV paper. The link to the first CFS segment I did on GMA Health is available at http://abcnews.go.com/Video/playerIndex?id=8664151.

 

[Dreambirdie]

I FOUND THE QUOTE BY NANCY KLIMAS:

"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

Here's the article http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

 

[leelaplay]

Klimas quote CFS worse than Aids

Hi Dr Donnica

Here's the Klimas quote. I'll look for the other one that says it's worse than cnacer.

Dr. Nancy G. Klimas, who serves on the board of directors of the International Association for Chronic Fatigue Syndrome, is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center.

But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.

from the nytImes Readers ask oct 15 09

islandfinn

 

[DrDonnica]

Input

hope that she mentions possible initial viral-onset of disease, in listing progression - as others may recognize this as their onset.

Also the "gastro" symptoms (abdominal pain, nausea - waxing/waning) that many of us experience - so often we sometimes take them for granted!

These are different from true IBS (although lots ALSO have IBS) - this may be from the viral component such as Enteroviruses, etc.

Maybe these were listed and I just didn't see them - sorry if I'm repeating!

jackie

ps just read Dr. Donnica's post...re: transmissibility (I'm talking ME/CFS NOT XMRV here!) I wholeheartedly agree with cautious wording here.....all I can offer is what MY doc keeps telling me over and over: usually if more than one family members has cfs it's because they caught it from the same initial viral SOURCE (at the same time)....not from each other (stress the word USUALLY! jury is out on this one!)

Two people drink, maybe water for example w/virus (maybe enterovirus)...one gets immediately sick (genetic predisposition and altered immune response) one is ok as immune response is healthy and fights off virus - maybe it's that simple?

Perhaps the initial virus never goes away (without aggressive treatments of some kind - either to correct immune disfunction or suppress viruses, possibly?) in either person....so that might account for the time lags in appearance of symptoms/disease.....could be it's all about the TH1/TH2 responses. I may be biased as my treatment consist of long term antivirals. Oh, never mind.

Yikes! I'm supposed to BENCHED and resting with my Blankie!....and NOT "talking"

jackie

Thanks Jackie! I did "forget" about the GI symptoms, although these were devastating for my son (he lost 10% of his body weight in the first 2 weeks--and doesn't have much to spare). We did have to put him on a medicine to stimulate his appetite. We also found great success treating his GI symptoms (which were accompanied by his ears turning bright red! Go figure!) with probiotics 2-3 times per day. We tried discontinuing them a few times and each time his GI symptoms returned within 36 hrs. YMMV.

While my husband and son are both affected, they became sick 5 years apart. In my son's case, he had a severe flu-like illness (the year of the vaccine shortage!) at the same time my daughter & I had the same illness. In us it lasted 7-10 days, but my son never recovered. And while he had profound weight loss, I lost about a pound! Eating is still a problem for him when he "crashes". And when he was at his worst, he couldn't even drink unless I held the water bottle for him, just like when he was a baby. He also had horrifically scary cognitive dysfunction & short term memory loss which lasted several months--I lost it when he couldn't remember the word for "pidgeon" (but I can't resist bragging to say he just got a perfect score on his math SAT last month!).

 

[DrDonnica]

Oprah

Yay Dr Donnica! I'd love to see info on the show about what further XMRV research is in process (perhaps this past Wednesday's meeting at the Cleveland Clinic would be a source for this info?), and what the time frame is - when we will know more.

And thank you. You're a hero. Shall we start lobbying Oprah next?

Yes! LOL! Don't know who to suggest you contact though. I was on her show once years ago.

 

[DrDonnica]

Input

Dr Donnica--Please include the quote that Nancy Klimas gave in a Q & A with the NY Times, where she spoke about her HIV patients being a hale and hearty bunch, while her CFS patients were doing much more poorly--due to the lack of money for research. And then she said... (I can't find the article, but maybe someone can--I am fried today), so I will paraphrase: IF I HAD TO PICK BTWN HAVING HIV OR HAVING CFS, DURING THIS TIME AND WITH THESE CIRCUMSTANCES, I WOULD PICK HIV. (WOW! That is one powerful statement.)

Great suggestion--I will look that up. My son has said that he would rather have a disease like cancer or diabetes that is not only treatable, but that people can understand. And I have to admit that when I suspected that he had CFS but we were still ruling everything out, I felt like a horrible mother for "wishing" that they would find "a nice simple brain tumor" when they did his MRI of the brain.

 

[Dreambirdie]

more good news

I just spoke with Frankie Vigil at the WPI, and she said she has been in touch with The Oz Show every day for the last few days, and they are still trying to schedule something with Judy Mikovits.

She is very happy that Dr Donnica is going to be on the show, and excited to see how it's all coming together.

YAY! Thanks to everyone for helping me with this Oz project. I am so glad our efforts are paying off!

 

[MEKoan]

Dr. Donnica,

Please forgive me for referring to your husband and child's illness as a "hook" - it is a heartbreak - but in regards to Oprah, it is a very strong and compelling hook.

You are in the unfortunate position of having everything. You are a doctor, you are a known entity to viewers and Oprah and you have been personally affected by this mysterious illness.

I can't imagine anyone better placed to be in the seat next to Oprah when she tackles ME/CFS.

Sometimes the last thing we want is to make "good television."

All the best to you and yours,
Koan

 

[Dreambirdie]

Great suggestion--I will look that up. My son has said that he would rather have a disease like cancer or diabetes that is not only treatable, but that people can understand. And I have to admit that when I suspected that he had CFS but we were still ruling everything out, I felt like a horrible mother for "wishing" that they would find "a nice simple brain tumor" when they did his MRI of the brain.

I've already posted it... along with the link.

I used to tell people I had "a rare blood disease" for which there was no cure. I now tell them I have "an impaired immune system." I rarely ever use the term CFS.
I learned early on, just how much ridicule and judgment that elicits.

 

[DrDonnica]

Quote from Dr. Klimas

I FOUND THE QUOTE BY NANCY KLIMAS:

"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

Here's the article http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

Thanks Dreambirdie! This was very helpful!