Dr oz preview - "simple stretching for xmrv"

[starryeyes]

Well, this thread has been a fun read.

Overall, I'm pleased. I do have to say that comment Dr. Oz made about how we all just need to keep stretching so we can fight this illness is upsetting.
This is eyebrow raising as well:

Yes, I wanted to explain post-exertional malaise and the concept of mild exercise when a patient is not in a flare up, but I was told we couldn't go there. Dr. Donnica

I do not understand. It sounds like we live in a Communist country. What we need to get across to the public is how much many of us love to exercise and wish we could. This is THE ONLY illness that has PEM. The ONLY one! I hear that a lot but we need it said on tv, again and again and again and again. And in fact, it's not just that exercise causes post exertional malaise, I actually hate that term, it's just like "fatigue". What happens is our symptoms get much worse. Those of us with Fibro experience horrible pain to the bone that lasts days and all of us get much sicker. We ALSO experience major fatigue for days or weeks following exercise as well.

While it was a 10--12 minute segment (LONG for tv time!), it included me, a patient interview, a patient video package, an XMRV animation package, and the "tips" section. So it was jam packed. Dr. Donnica

This is wonderful and I really like the article that Tina posted and I'm so glad we have you on our side Dr. Donnica! You say what needs to be said and you do it with class and intelligence. Thank you.

dreambirdie, thank you as well for all yer agitatin'. Keep it up!

tee

 

[_Kim_]

Pem

What we need to get across to the public is how much many of us love to exercise and wish we could. This is THE ONLY illness that has PEM. The ONLY one! I hear that a lot but we need it said on tv, again and again and again and again. And in fact, it's not just that exercise causes post exertional malaise, I actually hate that term, it's just like "fatigue". What happens is our symptoms get much worse. Those of us with Fibro experience horrible pain to the bone that lasts days and all of us get much sicker. We ALSO experience major fatigue for days or weeks following exercise as well.

tee, I couldn't agree more. PEM is the symptom that led me to my diagnosis. Though I'd been having health problems for months, I couldn't figure out why I was sick. At first I thought hypothyroidism, then hypoglycemia. But even after getting my blood sugar stable, I still felt like crap. I couldn't figure it out.

One day in early September, I bought a new 75 lb. bookcase at Office Depot, carried it (in its box) up to my apartment and assembled it. I was tired after that, but the next day, I went to help my mother do some light gardening/hedge trimming. I could barely lift the hedge trimmers up and the overhead stuff made me dizzy, nauseous and out of breath. After I finished, I collapsed on her couch, thinking, "this is not normal. What kind of disease causes post exercise symptoms?" A quick google here and there and I learned that the only disease to fit that symptom was CFS.

As I recount that story, I am able to see just how quickly my symptoms exacerbated after getting the flu shot on Sept. 22nd. Build a bookcase? Trim the hedges? Yeah, right! Now I am wiped out from merely taking a shower!! I forgot how able I was not that long ago.

I wish that the Oz show could have gotten in some info about PEM. It really is the only symptom that differentiates CFS from other fatiguing illnesses. And mentioning it might have helped some of the viewers who may be looking for the answer to their health problems.

 

[JillBohr]

I saw the Dr. Oz show and it was much better

than I expected. Perhaps I lowered my expectations after seeing the "let's exercise and get better" preview but I thought the show was very well done. I loved Dr. Donnica's (and men). She really wanted to make sure that the the audience knew that men get this too. Whenever I see or hear her name now, I will always visualize (and men). Dr. Oz did a good job explaining what a retrovirus is (trust me, people really have no idea) and I did like the visuals (sorry, I am so American and like my visuals). He also said at the very beginning and emphasized that a good nights rest does not overcome your fatigue the next day. Now I am paraphrasing here and he explained it much better than I just did. The point is, he did a good job explaining that this is a serious illness. Dr. Donnica and the patient were brilliant! In such a short period of time, they did a great job. When I heard the patient, it was almost exactly what my aunt and sister-in-law went through.

I really do hate American television that tries to discuss topics such as this in sound bites and always feel obligated to present some simple solution to the most serious of problems. I lived in Europe for 11 years and I do miss their in depth documentaries they showed on various topics. Perhaps the BBC will air one on this virus in the near future. I urge all of you to contact the BBC and request that they do so. Maybe, just maybe, our local PBS stations may pick it up and our local and national commercial TV stations will run with it.

I also wanted to add that when Dr. Oz did suggest going to the mailbox to get the muscles moving, you can see that he felt guilty even going there. It was much different than how he presented it on the preview.

 

[Dreambirdie]

Hi Jill--

I just started a new thread for comments about the actual show. Could you move your post there? thanks
http://forums.aboutmecfs.org/showthread.php?t=1312

I'm glad to hear it was much better than you expected!

 

[DrDonnica]

Dr. Donnica, your article was wonderful. I was curious about the mention of noisy places--could you talk a little more about that?

There's not much to say about it other than just as some PWC are sensitive to light (photophobia), some are sensitive to noise/crowds or any other kind of overstimulation.

 

[DrDonnica]

Thanks to everyone for what they're doing here.

The more I read, the less I trust my ME diagnosis, partly due to the complete absence of brainfog.

Cognitive dysfunction ("brain fog") is only one of the "optional" criteria for the diagnosis of CFS. Not having it is a blessing, but it doesn't mean that you don't have ME. Many PWC have symptoms--including cognitive dysfunction--that fluctuate over time. I have also heard many patients say that their cognitive impairment was worst at the beginning of their illness (Brian had no short-term memory at all for 12 weeks & couldn't read!), but that it improves or gets worse with "flares".

 

[DrDonnica]

Well, this thread has been a fun read.

This is THE ONLY illness that has PEM. The ONLY one! "

I explained that to Dr. Oz directly before the segment taped. The medical term for a symptom which is unique to one diagnosis is "pathognomonic".

 

[Kati]

Cognitive dysfunction ("brain fog") is only one of the "optional" criteria for the diagnosis of CFS. Not having it is a blessing, but it doesn't mean that you don't have ME. Many PWC have symptoms--including cognitive dysfunction--that fluctuate over time. I have also heard many patients say that their cognitive impairment was worst at the beginning of their illness (Brian had no short-term memory at all for 12 weeks & couldn't read!), but that it improves or gets worse with "flares".

In the 1 year I have been sick, I have had only a couple weeks where I slurred my speech when tired and had a terrible time with word finding. In terms of short term memory, I have been compensating by writing down everything I need to remember, but I don't think it's much of an issue. I do get wicked headaches though...and something I call brain cramps- lasts for 2 or 3 seconds and it's like if you were trying to wring a cloth.

 

[usedtobeperkytina]

Yes

And, I almost missed an accurate diagnosis because I did not have, as far as in my neck, swollen lymph nodes. As far as I can tell, in the five years I have been sick, I never have. I didn't have muscle pain until two years after I first started showing symptoms. For years, my symptoms seemed to be in the sex hormones, alone. Gradually, things changed, fatigue increased, symptoms increased and spread to other days of the month. Then I plummeted, which is when I got fibromyalgia.

But even on the CDC list, not all of us, even some of us very sick, do not have all the symptoms. And some of the symptoms come later, in stages. I had cognitive problems in years 2 until now. But vertigo didn't come until two and a half years into my illness. But, for oh.... cognitive block.... the Seabiscuit author, her vertigo was early and extreme.

It just doesn't fit into a nice little box.

Although I figured I had CFS or FM, and my gyno suggested it after my plummet, I was not convinced until I read of Komaroff's research on blood pressure problems. I know I have that, been fainting from vasovagal response since I was five. So that put the pieces of the puzzle together in my case.

The point being, we all don't have the same symptoms at the same time in the same order to the same level. We all don't match the CDC criteria exactly, hitting all of them.

Tina

 

[starryeyes]

Well, this thread has been a fun read.

This is THE ONLY illness that has PEM. The ONLY one! "

I explained that to Dr. Oz directly before the segment taped. The medical term for a symptom which is unique to one diagnosis is "pathognomonic".

Thank you for explaining that Dr. Donnica. We're so lucky we have you on our side and I always like trying to learn new vocabulary.

 

[Advocate]

This is THE ONLY illness that has PEM. The ONLY one! "

Is that true? If so, it is amazing! In 16 years, I have never heard that before. Why have we not all been emphasizing this?

 

[Lily]

Pem

I think this has been emphasized - and if I'm remembering correctly, in the Canadian criteria - it is THE most distingquishing criterion.......

 

[Advocate]

I think this has been emphasized - and if I'm remembering correctly, in the Canadian criteria - it is THE most distingquishing criterion.......

Hi,

Yes, I get that part. Here's a summary of that part.

"In sharp contrast to the CDC's 1994 definition, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations.?

I also like the "delayed recovery" in this quote from that same site:

A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. [Editors note: The M.E. Society prefers to use delayed recovery of muscle function, weakness, and faintness rather than fatigue. Further, we disagree that the muscle dysfunction and post-exertional sickness is unexplained.

But here's what I don't find in the definition--that CFS or ME are the ONLY diseases that cause post-exertional fatigue--the kind of fatigue where recovery is slow or non-existent. It was the word "only" that caught my attention.

Here's Dr. Donnica's original statement: "This is THE ONLY illness that has PEM. The ONLY one!"

Can you find any definition that includes that statement? Has the CAA ever made that statement? Has anyone other than Dr. Donnica ever made that statement? I've suspected the truth of it for years, but I've never heard anyone use the word "only" before. Or if they did, it passed right over my head until now.