Group Letter for Dr Donnica re Oz show

MEKoan

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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.
We understand. This experience can take one to some pretty crazy places and some very surprising thoughts.

We understand.
 
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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
No offense taken! In medicine we always say that the last thing you want to hear from your doctor is that you have an "interesting" case. Hmm. . .maybe we should lobby Grey's Anatomy to have a CFS patient case. . .!
 

Dreambirdie

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familes

Regarding families, I want to say that not all families are supportive and caring when it comes to CFS. There are many people with CFS who have been dismissed as "mental cases," and written off by family members, who view CFS as BS. I personally received HORRIBLE treatment from both my mother and sister, who accused me of being a malingerer and a manipulator, and treated me as if was faking my illness, as if I had volunteered for it. Some of the attacks were very vicious and I eventually had to cut all ties with both of them because of this. I was fortunate that my father did not join them, but believed me and helped me out, against the wishes of my mother.

I know I am not the only one with this kind of story. I think that if I had had a test result to confirm just how PHYSICAL my condition was, I would not have been treated so badly. There would have been PROOF, and PROOF is the bottom line for the skeptics and the abusers.
 

Frickly

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Dr. Donnica,

My suggestions are the same as many others.....

1. CFS has nothing to do with being tired. CFS patients do not make the glutithione/ATP that our muscles need to contract.

2. Neuro immune disease not syndrome.

3. List symptoms such as virus's, bacteria, pain, inflammation, swollen lymph nodes, fevers, ect.

4. Also, I think the smaller study done by WPI on autism could be significant. I would like more people to understand the possible impact of this new research. This may not only be significant for CFS but also autism and other diseases. My son is on the spectrum and I have hope that this research will help both of us. I would like to see researchers in the field of autism get just as excited about this new research.

I am so sorry your son is ill but have hope that there will be treatment in the near future. Thank you so much for your time and interest in our concerns. I am looking forward to watching the show. :)
 

dannybex

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Hi Dr. Moore...

So great to hear you'll be on the show and thanks in advance for diving in here with us on these forums. I've completely agreed with Koan that you're THE best representative we have to discuss CFS/ME on any show. I'm amazed how you can get out so much concise, accurate, unbiased info with such clarity -- and in laymen's terms -- in such a short period of time.

Don't want to overload you with things to mention, but not sure if potential environmental triggers (like heavy metals, pesticides, mold exposures, etc.) have been brought up, so just wanted to throw that into the soup.

In an ideal world, you'd be the guest for the entire show, with questions from the audience as well...but here's hoping you'll be allotted at least 15 minutes, after all, something tells us that this show is in response to the negative mail they must've received in response to the last show.

Many thanks,

Dan

(formerly known as Danny Downer) :)
 

Sing

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For Dr. Donnica, Dreambirdie, Koan

Dear Dr. Donnica,

It is heart breaking to have a child so sick, but you have not only helped him, and I am sure your husband too, have better lives, you are helping to lead the charge for us all, along with at least two others whose children have been terribly sick, Dr. Friedman and Annette Whittemore. Compassion and courage have been ignited here.

Let us think of this next TV show as one among more to come. Thank you Dreambirdie for your fearless and skillful initiatives, Koan for how you are helping us understand the media better, and everyone for your caring and great suggestions!

Cecelia
 
A

anne

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Dr. Donnica, thank you so much. I had CFS and my husband has it now, and we are very scared for our little boy. I'm so sorry for everything you've been through, and thank you for speaking for us.
 

jackie

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Dr. Donnica..so sorry about your son! (I/we can sympathize with your anguish so well!)

According to my doc (and I'm both paraphrasing - a MOST unscientific thing to do! - AND reaching into my limited memory bank!)...one of the reasons that Enteroviruses, for example, survive for so long is that they do not KILL their host cells! Our own cells actually protect them from the attack of our immune response.

It's possible, from the start of the virus infection, the immune system failed to kill off the infected cells. Afterwards, the immune systems efforts are futile in destroying the virus and unintentionally continue the flu-like symptoms.

Periodicaly, the virus loads in cells will decrease as the result of an immune response. You feel "better" for awhile - since the immune response subsides. Then... the virus grows back - the immune system reacts again... and so on and so on!

Re:.your sons terrible G.I. problems (again, my Docs explanation for my recurring distress).....the viruses in the respiratory tract are swallowed into the stomach - then travel to the intestinal tract where more infections occur. The symptoms of upper/lower G.I.tract can occur when the immune system reacts to viruses growing in the intestinal cells (virus protein has been found in muscle layers of the small intestine and colon).

This may be responsible for motility problems and explain the gastro symptoms. Decrease the viruses in the cells - you feel better.

Re: brain fog/cognitive function/memory, headaches, dizziness....once again, problems may be the result of immune response against virus-infected cells in brain (enteroviruses esp. are known to spread to many regions of the brain).

Re: the time lag (sometimes many years!) Sometimes after the acute infection resolves - the symptoms continue at low levels or even disappear - resulting in less "clues" to trace back to the ACUTE infection.

Other times people already had an episode of the same symptoms years ago! When the immune system is unbalanced, the viral infection recurs causing severe symptoms. All about the shift from TH1 to TH2 (immune responses).

Since many infections (not just enteros - although there are over 100 of those!) behave this way...some Doctors suggest Immune Boosters and/or Anti-virals be taken for long periods of time.

Thanks so much, and good luck with the show! .........jackie:)
 

jackie

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Dr. Donnica...re my previous post - I was thinking about your son and your husband's conditions (got me thinking - and wanted to share some stuff!) - these weren't meant to be suggestions for show!? Also, didn't want to "tout" anti-virals (although I noticed I mentioned them several times! sorry!) as many choose not to use them (with good reason):eek:.


jackie:cool:
 
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another severity quote

Hi Dr Donnica and all

I've been trying to find a quote on the severity of ME/CFS. It went something like ME/CFS is more disabiling than cancer and MS except for the final stages.

No luck yet - (dang - thought I had saved it somewhere I'd find it)

but, found this, from the CDC (might be useful to include them in a good way)

CFS can be debilitating. By definition, all CFS patients are functionally impaired. While symptom severity varies from patient to patient, CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.
The other quote was shorter and more striking (any help anyone?? anyone remember it?)

islandfinn:)
 

jackie

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Hi I.F.! Are you referrig to Cheney's quote ".....without exception, every disabled ME/CFS patient is in heart failure." ? - or the reference comparing levels of severity found in "Canadian Consensus" document? (that one I can't remember exactly - but could look it up if you want me to....probably WILL look it up just in case!):rolleyes::p

jackie.............:)
 

jackie

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I.F. Is this what you wanted? From Conadian Consensus doc.

"ME/CFS is actually more debilitating than most other Medical problems in the world, including Patients undergoing Chemotherapy and HIV Patients (until about two weeks before death.)" That was all I could find off-hand.




jackie:):
 
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How about this, recently sent to Co Cure by RESCIND:

Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name Change Movement

http://www.rescindinc.org/history.htm

Dr. Shelekov looked puzzled and maybe a little skeptical.
But Dr. Marc Loveless, sitting next time to him said,
"Dr. Shelekov, this man (meaning me) is telling you the truth.
I have treated more than 2500 AIDS and CFS patients over
the past 12 years. and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"

I immediately said to Dr. Loveless that "YOU have to use
that line in every speech you give on this illness for the
rest of your life!" (in 1994, Dr. Loveless gave this same
testimony under oath to the US Congress).
 
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Or this, found at:

http://www.ahummingbirdsguide.com/whatisme.htm

In the 1980s Mark Loveless, an infectious disease specialist and head of the AIDS and M.E. Clinic at Oregon Health Sciences University, found that M.E. patients whom he saw had far lower scores on the Karnofsky performance scale than his HIV patients even in the last week of their life. He testified that a M.E. patient, feels effectively the same every day as an AIDS patient feels two weeks before death (Hooper & Marshall 2005a, [Online]).

But in M.E., this extremely high level of illness is not short-term it does not always lead to death it can instead continue uninterrupted for decades.​
 
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I.F. Is this what you wanted? From Conadian Consensus doc.

"ME/CFS is actually more debilitating than most other Medical problems in the world, including Patients undergoing Chemotherapy and HIV Patients (until about two weeks before death.)" That was all I could find off-hand.

jackie:):
WOW jackie - that's it!:D:D:D:D

I've been looking for days, including about 10 times over the consensus doc as thought it was from there - oh my deteriorated reading skills.:(:(:(:(

Can you give me the link (or just cc what it says in the address box at the top of your screen http://..............) AND tell me what page you found it on?????

much thanks


sosumi -

How about this, recently sent to Co Cure by RESCIND:

Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name Change Movement

http://www.rescindinc.org/history.htm

I have treated more than 2500 AIDS and CFS patients over
the past 12 years. and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!"

(in 1994, Dr. Loveless gave this same
testimony under oath to the US Congress).

thanks ........that's strong


islandfinn:)
 

jackie

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Hi I.F.! You know how my brain works! The only way I can "find" my way "back" to something is to leave a trail of breadcrumbs!?

BUT....I tried typing (after the http://www.) "mefaction net documents me overview pdf" (didn't work when I added periods between the words?!Sheesh!) and I found it!

There are two consensus docs (one for Practioners - one for patients) This is the version with all the colorful Viruses on the front page, Listed under "Signs and Symptoms, 1.Fatigue, page 3 (The other version has teeny tiny little text. ack!;))

Hope this gets you to it!:)


ps I.F....you showed me how to do something last week and I didn't say thanks! so thanks! just can't remember what you showed me!:rolleyes:

jackie:cool:
 

jackie

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I.F. of course I meant "PRACTITIONERS". On the other hand...I AM probably a "Practioner".....as in I am one who "practices"....."taking action"?.....maybe?

i hate it when i do that.........................j:mad:Bah!:(




ROTFL:D:D:D:D:D
 
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severity quote

I.F. of course I meant "PRACTITIONERS". On the other hand...I AM probably a "Practioner".....as in I am one who "practices"....."taking action"?.....maybe?

i hate it when i do that.........................j:mad:Bah!:(


ROTFL:D:D:D:D:D
Do what?:confused::confused:

Here's the quote you found:

from An Overview of the Canadian Consensus Document, ME/CFS A Clinical Case Definition and Guidelines for Practioners 2003 pg 3

"ME/CFS 'is actually more debilitating than most other medical problems in the world' including patients undergoing chemotherapy and HIV patients (until about two weeks before death)."

islandfinn:)
 
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shower example of fatigue

hi DrDonnica

One of the simple illustrations that works for me when people are curious about what having ME/CFS is using taking a shower.

something like:

Most days, just trying to take a shower is impossible. It takes to much energy. When I think I can have one, I can't scrub as it's too tiring, and it's very short as I can't stand for long and because I have heat intolerance. Most times I have one, it knocks me out for the rest of the day, or for 2 days, or for longer.

islandfinn:)