Klimas Interview and (Tina Tidmore) - with XMRV

[Cort]

Haven't heard it yet

http://www.archive.org/details/MecfsLakeCo.Cal.InterviewJan2011

It's quite long. Tina Tidmore is a natural. (Already knew Nancy was)..Nancy Covers the basics of XMRV....9 negative, 2 positive followup studies...she noted that the virus is so rare that it is at the limits of PCR technology and researchers have to amplify, amplify, amplify...causing a real risk of false positives...and false negatives .

Later she talks about all the weird things doctors have told patients to do ...change their hair.....

 

[usedtobeperkytina]

Thanks

Thanks for posting.

Got to stop the "um" word whisker.

Tina

 

[Cort]

Tina!!!!!! You are a natural.....you are so smooth on the radio.......

You MUST have done this before...Tell me you have....

 

[Marty]

I heard a new - to me - thought in this interview from Tina. Public relations wise, maybe the most invalidating thing is our laundry list of symptoms that includes everything under the sun. Doctors and our families translate that as "hypochondriac". But Tina distinguished between diagnostic symptoms and other symptoms that might be present. Generally, I think we should be talking only about diagnostic symptoms when describing the disease to the public.

I thought it was a good interview and I got my dishes washed while listening.

 

[ixchelkali]

This was terrific. I wish I could get family & friends to listen to it, because it covered both the science in simplified form and what it's like to have the disease. It really did a good job of hitting many of the major issues, including why people who aren't patients should be concerned. I wish it were being broadcast nationwide.

For those of us who have been sick for a long time it may not be news, but it would be a good starting place for the newly diagnosed.

Well done, Tina & Nancy. Thank you!

 

[Cort]

I heard a new - to me - thought in this interview from Tina. Public relations wise, maybe the most invalidating thing is our laundry list of symptoms that includes everything under the sun. Doctors and our families translate that as "hypochondriac". But Tina distinguished between diagnostic symptoms and other symptoms that might be present. Generally, I think we should be talking only about diagnostic symptoms when describing the disease to the public.

I thought it was a good interview and I got my dishes washed while listening.

Darn Marty, we agree again.... I think the severity of symptoms part should be there but be relatively brief and then we move onto other stuff. I have no idea how it was in the interview - I don't remember - be in general we should be quite wary of listing all our strange ills.

 

[Sing]

Tina, I feel you do an excellent job communicating conceptually and emotionally, in very focussed ways. This is what the patient (impatient) community needs!

Something I heard Dr. Klimas speak about which interested me: how brain studies have shown that people with our illness may be using many different parts of the brain to perform a task which is normally taken care of in one small area.

I can relate to this finding. I have to use all my intelligence and resources to pull together regular tasks. These take me longer than normal, but by hook or by crook, I usually end up doing them. Practical math problems or something with complex logic or the twists and turns of double negatives, I may no longer be able to follow or do. Anyway, I am trying to draw on my whole brain to function and cover what I once could do quickly and easily. If people knew how hard I am trying and working just to appear normal or function at the low end of normality, I think they would be more sympathetic. I am more sympathetic now of old people, people with dementia or head injuries or other neurological problems...

 

[usedtobeperkytina]

thanks guys

Thanks guys. Dr. Klimas' explanations about the brain stuff was interesting. I didn't know some of it. The part about having to use the whole brain to do what healthy people do in just a small part was very interesting. So maybe our brain has to work twice as hard and so mental activity can be just as taxing. In fact, I read something about Alzheimer's that shows how much blood flow is required to do complicated mental task. It was like half the blood. It seems our brain has lots of issues: blood flow, lesions and requiring more brain to do what others can do.

Now, I would love some feedback. I have thought when speaking to people in general that when I describe symptoms that I hear the words coming out of my mouth and think, "I sound like a hypochondriac."

But at the same time, I never had swollen lymph nodes (well, that I could feel, maybe swollen in my torso) and the sore throat didn't come until year four for me. Pain was year three.

But, the intestinal, easy bruising, dizziness, night sweats, weight loss, sensitivity to cold, etc. would have helped me to see I have CFS earlier. I guess what I'm saying is that we should put out that people have these other symptoms too so that patients will not be thought of as hypochondric and doctors will understand and not think the person is hypochondriac. Better to create more understanding. Might help patients who have to deal with family too. So family hears that the symptoms they hear from their loved one is not hypochondria but a result of the multi-system aspect of the disease.

I guess what I am saying is just listing the diagnostic symptoms does not accurately reflect our illness.

But, I am open to your opinions on this.

Tina

 

[illsince1977]

I get 4 seconds worth of audio, for some reason. Any other links I could try?

 

[3CFIDS@ourhouse]

This was an excellent interview- thank you, Tina! You didn't sound sick! Sorry, I couldn't resist that bad joke variation of "But you don't look sick!" I was very interested in Dr. Klimas' mention of the activity over various parts of the brain. I wonder if it's possible that instead of using many parts of the brain for tasks that are normally focused in one part, the activity all over the place shows that we can't filter out stimuli. So various parts of our brain are at work all at once? It would be interesting to hear more about that study.

As far as symptoms go, the more symptoms most doctors hear, the more they write us off. In med school my son said they were taught that if a patient has odd symptoms that don't fit the "boxes", it's probably psychological, or their famous "somatization disorder". His class was taught nothing at all (this was in 2010!) about the documented abnormalities in CFS/ME. But for public education purposes, I think it's helpful to include the other symptoms as Tina did so well in the interview. The scenario about the grocery store was very instructive and helps people see that what looks odd has a real physical cause. Thank you, Tina!

 

[Sing]

I heard that Montoya is studying how we are using many parts of our brains to do what healthy people might use one small part for, but I don't know the details of this---

Tina, it isn't you, but maybe the symptom list turns out not to be that coherent or helpful to some listeners, and that giving examples or describing scenarios such as you also did works better. However, with doctors, I try to organize symptoms in a list fashion too, such as a list of neurologically related symptoms, or endocrine symptoms or immune symptoms. This is another way to try to give it coherence besides the story or stand alone example (fall down example, is more like it!). I am always wondering how to communicate better to listeners, whether health care practitioners, people unfamiliar with ME-CFS or friends, etc.. So often in my life, people haven't seemed to want to understand, and expecting that is one of the hardest things I have to overcome. Sometimes it seems to me that finding an effective way to communicate is like struggling with a mass of keys, looking for the one which will fit the lock, and just not knowing....

 

[Marty]

3CFIDS@ourhouse
the more symptoms most doctors hear, the more they write us off. In med school my son said they were taught that if a patient has odd symptoms that don't fit the "boxes", it's probably psychological, or their famous "somatization disorder".

3CFIDS, that has been a rule for doctors for decades, back to the 1960's "psychosomatic era" that I remember. A less obnoxious word is "functional". Another way to say it is if patients have 3 or more complaints, the doctor doesn't want to hear it; and unfortunately some people just go on and on about their symptoms. The public kind of feels the same way; if you have too many things wrong with you, they chalk it up to "hypochondria" and turn a deaf ear.

That's why I think we should clean up our act and talk about diagnostic symptoms up front. The one word "Dysautonomia" covers a lot of symptoms; "immune dysfunction" covers a lot of symptoms. Even "fatigue" covers a lot of symptoms. If we immediately launch into a list every symptom of every patient, it does sound like a unbelievable story, doesn't it? This is really a difficult disease to describe easily.

 

[sensing progress]

One thing I learned from the interview that I didn't know before is why we need to take such low doses of medications compared to healthy people. She said something about our detoxification mechanisms don't work correctly and that medications start building up over time, hence the need to take less. This was discussed around the 34 minute mark.

 

[Sing]

I think I take less than the average dose for things. I have to cut pills in half or use 3/4. But something else I do which really helps with some medications is to take a day off once a week or every five days, or? I have played with this enough to have worked out the best dosages and numbers of days in a row. And it is definitely true that some meds seem to build up and need an extra day to clear.

 

[eric_s]

One thing I learned from the interview that I didn't know before is why we need to take such low doses of medications compared to healthy people. She said something about our detoxification mechanisms don't work correctly and that medications start building up over time, hence the need to take less. This was discussed around the 34 minute mark.

That's interesting. I have never felt that i react abnormally to medications, but i hardly ever use any. My mother, though, has always said that she reacts very sensitively to drugs. And also she has some sort of pain problem that never really goes away, for many years now, probably decades. With inflammation at times, i think. She does not have other ME/CFS symptoms like severe fatigue or PEM and says it's not Fibromyalgia. Of course those symptoms don't allow for a diagnosis, but i've always suspected that if i have XMRV and it's causal for ME/CFS, i must have it from her, in case it's transmitted in the same way as HIV, because i'm not aware of any risky behaviour on my part before i got ME/CFS. So there is a possibility she has XMRV and it's causing those symptoms.

 

[August59]

One thing I learned from the interview that I didn't know before is why we need to take such low doses of medications compared to healthy people. She said something about our detoxification mechanisms don't work correctly and that medications start building up over time, hence the need to take less. This was discussed around the 34 minute mark.

I can totally agree with this. About 3 years ago I was prescribed a once-per-day Xanax (not sure if they still make it or not). Once a I started taking this in 3 days I felt like I was in a coma and actually slept through day 4. Woke up on Day 5 feeling great and I started the Xanax again and 3 days later another coma (not really just felt like it). I still had not put 2 and 2 together yet as I slept through day 9. Woke up on Day 10 feeling good and repeated the 3 days of once-per-day Xanax, except this time after I woke up and it clicked what was happening.

The days that I slept all day I did not take the Xanax, which allowed it to clear my system. It was a hard way to find out that i was not clearing things as fast as I should, but it could have been worse due to another medication could have caused liver or kidney damage. I wonder if Dr. Klimas knows what part of the detoxification system is slowing down? Probably not as it is more than likely a combination of methylation, lymph system and sluggish liver.

I had a hard time with my thyroid medication, but I finally talked doctor into taking 1 day off out of seven and it appears to be helping.

We are really going to have to be very keen to this if antivirals enter the picture.

Good catch on spotting this!! Thanks

 

[usedtobeperkytina]

ok

Ok, guys, I am listening.

Maybe I can introduce the concept by saying, "Whereas science is accustomed to a disease in just one organ, with one test, and a simple treatment (such as one medicine), this disease does not fit into that box. It is a dysfunction of the whole body and multiple body systems and the way they interrelate, like a drunk football team trying to get a touchdown. So the symptoms vary from person to person, come and go, and include symptoms that patients and specialized physicians recognize as common in this illness, yet may seem strange to those who are not familiar with it."

How's that?

Tina

 

[meadowlark]

That metaphor is dead on for me, Tina.

 

[sensing progress]

Ok, guys, I am listening.

Maybe I can introduce the concept by saying, "Whereas science is accustomed to a disease in just one organ, with one test, and a simple treatment (such as one medicine), this disease does not fit into that box. It is a dysfunction of the whole body and multiple body systems and the way they interrelate, like a drunk football team trying to get a touchdown. So the symptoms vary from person to person, come and go, and include symptoms that patients and specialized physicians recognize as common in this illness, yet may seem strange to those who are not familiar with it."

How's that?

Tina

Very well stated.

 

[*GG*]

I like the analogy!

GG