DR.BELL news letter, important !!! exercize test f.cfs

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Feb 7, 2007.

  1. karinaxx

    karinaxx New Member


    Lyndonville News
    Information and Support for the ME/CFS/FM Community
    David S. Bell MD, FAAP, Editor

    Volume 4, Number 1: February 2007

    LynNews@DavidSBell.com

    ———————————————————————————

    FLORIDA CONFERENCE

    Introduction
    Well, it is another new year. Happy new year everyone, and I hope that your holidays were enjoyable. This issue of the Lyndonville News is a bit of a summary of the conference of the International Association for Chronic Fatigue Syndrome (IACFS) held January 7 thru 12, hosted by P.A.N.D.O.R.A. More detailed and balanced summaries will be in the IACFS newsletter.

    The conference was wonderful. I got lots of pictures, and I will try to share as many of them as possible over the next couple of years. I want to identify some of the great minds that are trying to make progress in understanding this miserable illness.



    Conference Reports – overview
    The conference was perhaps the best ever. As before, there were two parts, a patient-oriented part and a scientific part. Both were superb. For those patients who were there, they will probably have a difficult next month trying to recover and process what they experienced, but it should turn out to be worth it in the long run.

    The science is getting better and better. One presentation was the Miami erythropoietin trial. Good news and bad. First, 70% of ME/CFS patients have a low red blood cell volume. This was an NIH funded trial and solidifies the finding for use in the laboratory evaluation. The bad news is that treatment, while it brought the RBC volume up to normal, it did not help the symptoms very much. Some help to the orthostatic symptoms, but not fatigue. The meaning of this for me is what we have been leaning toward. The low blood volume contributes to orthostasis and treatment of that is helpful, but is not the prime target.

    Some persons clearly have persistence of virus in their brain, particularly Epstein-Barr virus and human herpes virus-6, and treating those viruses with the right drug may be very (very, very) helpful. There is a new project starting in California that intends to find out just how many persons with ME/CFS have this virus. But here’s the problem (there is always a problem). Our local lab, and most others are hopeless when it comes to measuring for these viruses accurately. They are so bad it is not even worth doing. The good labs require cash for the testing, and it is unlikely that your insurance will cover the test at all. You would be able to deduct the cost of the test from your taxes at the end of the year, but the money has to go with the sample. This makes finding out who should be treated with the antivirals virtually impossible. Go figure, you spend $7,000 a year for medical insurance but can’t get the tests that are likely to be of help.

    Lots of discussion of cellular hypoxia. This is the issue of oxygen being delivered to the cells of the heart, brain, skeletal muscles and other organs, but the process of turning the oxygen into energy is derailed. Mitochondrial, metabolic, cellular, glutathione, nitric oxide…. we don’t even know what to call this area yet. A complicated subject, and one that I would like to explore in greater detail in the office, but again, the testing requires cash up front for the laboratory tests. This is still quite new, and treatment aspects may not be ready for prime time. Dr. Paul Cheney gave a superb lecture on “Functional Hypoxia” as the keynote speaker of the patient banquet, but it may have been a little over the heads of the worn out, CFS-drained patient brains trying to eat dinner. It is my hope to attempt to translate this talk at some time in the near future.

    Lots of very good talks on measuring different neuro metabolites and metabolic break down products in both ME/CFS and fibromyalgia. Tests of genes in the spinal fluid, lactate in the brain, holes in the heart, spectroscopic blips on serum samples. Good science which adds to our understanding, but not ready to become a simple test. Hang in there for another two to thirty years.

    New pediatric diagnostic criteria. Very exciting. We now have an instrument that will be able to diagnose ME/CFS in children and adolescents. The instrument will be posted on the IACFS web site, and we will have it freely available in our office. Right now we are collecting data from all over the world. Next step is to publish in a good pediatric journal and make these criteria official. This is a very good science-based advance in the ability to correctly diagnose children and adolescents with ME/CFS (see Advocacy section).

    The doctor-to-doctor session had a lively discussion of saline infusions, replacement of androgen and estrogen, sleep medications, environmental testing and other management issues. Very interesting, and practical.



    History
    In this conference, Staci Stevens, Dr. Mark Van Ness, Dr. Chrisopher Snell, Peg Ciccolella, and their group presented their test-retest exercise paper summarizing the results in six patients. I am including this summary in the history section of the newsletter because I believe that it is history in the making. It is the first time a clear proof of physical impairment has ever been presented to circumvent the controversy. For this reason I would like to describe it in a little more detail.

    Peak oxygen consumption, percentage of predicted heart rate, and oxygen consumption at anaerobic threshold were measured on two consecutive days in 6 CFS patients and 6 sedentary control subjects and compared to accepted normal data. As expected, data for CFS patients and control subjects were not significantly different for the first day exercise test, consistent with previously published studies. However, on the day 2 exercise test, CFS patients had significantly lower VO2 peak, and at anaerobic threshold. VO2 peak: controls 28.9 +/-8.0 ml/kg/min vs CFS: 20.5 +/- 1.8 ml/kg/min; Anaerobic threshold: controls: 18.0 +/- 5.2 ml/kg/min and CFS patients: 11.0 +/- 3.4 ml/kg/min.

    Normal persons should have less than 8% variability in test-retest within 24 hours, and the sedentary controls demonstrated this low variability. However the drop on peak VO2 and anaerobic threshold was substantial, in the range of 38%. These changes in day 2 exercise testing suggest a significant and verifiable physical abnormality in CFS patients, essentially verifying the symptom of post-exertional malaise.

    The issue, of course, has been the need for patients to “prove” their disability to social security and private disability companies in order to receive benefits. In the old days, health care providers could write a letter saying that their patient was disabled but this no longer matters. Many health care providers have not spent years of research in CFS, and, while they know their patients, do not know how to prove the disability. Medical insurance companies will not pay for unusual laboratory testing such as the 2’5’A, and RNase L assays. Disability Companies disregard the results anyway because of complex arguments. This test-retest exercise test has potential for circumventing the whole debate.

    First the test is 100% objective. It does not rely of patients complaints, what disability insurance companies call “moans and groans”. Effort can be assessed and CFS subjects can be shown to give adequate effort. The results are showing a marked drop in the anaerobic threshold. This is the level that cells convert from oxygen metabolism to anaerobic (no oxygen) metabolism. Normal, lazy, and crazy persons cannot affect their anaerobic threshold. But persons with ME/CFS have a demonstrable defect, probably in the area of energy generation in the mitochondria of individual cells.

    There will be more of this over the next few years, as it could help define subgroups, and may point to severity and prognosis. In my opinion, disability companies have cancelled disability payments for thousands of persons who they claim are only “faking” disability. I know one disabled mother who lived in the back of a Chevrolet. Now we can prove that the disability of ME/CFS is very real.

    A note of caution. The test on the second day makes people feel quite ill. We will be attempting some methods of making the recovery more comfortable for patients with severe illness.



    Advocacy
    It is my hope that some energy will be spent on testing and encouraging the new pediatric diagnostic criteria. To this end I would be willing to speak at gatherings of school nurses or school physicians, such as an annual state educational meeting. One way to reach pediatricians is through practical application of these criteria in children or adolescents who are having difficulty attending school. If you have a child or adolescent in this position, you might be able to help arrange an educational meeting via the school nurse at your school. If I could not do such a lecture, I can communicate to the other members of our committee that developed the criteria. If there are proposals to do such a lecture, please call Debbie at 585-765-2060.

    ...........................................................

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    To Subscribe: If you wish to subscribe to the Lyndonville News, go to www.DavidSBell.com/DSBJoin.htm and follow the instructions. The e-mail subscription is free, while the hard copy sent by mail costs $20 per year. To unsubscribe, send an email to Admin@DavidSBell.com or click the unsubscribe link at the bottom of this email.

    Disclaimer: Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

    ——————————————————
    ©Copyright 2007. David S. Bell. All Rights Reserved.
    ——————————————————


    [This Message was Edited on 02/08/2007]
  2. karinaxx

    karinaxx New Member

  3. JolieLuLu

    JolieLuLu New Member

    for taking time to post this info.

    Im brain dead at the moment to engage in conversation:(

    love and light,
    jolie
  4. karinaxx

    karinaxx New Member

    me too
    k.
  5. spacee

    spacee Member

    I am brain dead too. I was looking at the household bills to pay this week and they "didn't make sense" to me. Adding and subtracting are becoming challenges.

    I have Dr. Bell's pediatric diagnosis criteria. I hope to have it posted within a week.

    Hugs,

    Spacee
  6. karinaxx

    karinaxx New Member

    just in time.
    i got something from mezombie, but i dont know if this is the same thing. it is not from Dr.Bell.

    take care

    sorting out Dr.bills and insurance stuff: it literally is "going on my nerves", brain is getting i jumbeled, i know what you mean!
    karina
  7. karinaxx

    karinaxx New Member

    i would also look forward to beeing able to entangle "Fuctional Hypoxia"!!! as if i could with my ME brain....
    it is Dr.Bell who wants to do so.
    but cant wait for this too.

    love karina
  8. shar6710

    shar6710 New Member

    This would be great if they could standardize a test like this. It would help not only in diagnoses but in SSDI applications too I would think.

    Of course if you had CFS and took the test you'd then be in bed for days!

    Interesting article.

    Thanks,

    Shar
  9. karinaxx

    karinaxx New Member

    yes, thats why i thought it so important and Dr.Bell thinks it would help diagnosing kids too. that would be very important, because the issue with dxing kids is very complex.
    yeah, you would be in bed after, but my guess is that once done, not daily , one will recover fairly fast. well, that depends on you level of disability.

    karina
  10. u34rb

    u34rb New Member

    Is the red blood cell volume the same as blood volume? What is the treatment that "brought the RBC volume up to normal"?

    I'm not surprised that there is talk of "functional hypoxia". I'm sure that's why regular hyperbaric oxygen helps my fatigue and FM symptoms.

    What is this "instrument" that tests for pediatric ME/CFS?

    What is the effect of "saline infusions", will this increase blood volume?

    I intend to look up the "test retest exercise".

    This will all certainly help sub grouping.

  11. mezombie

    mezombie Member

    I underwent one day of this type of testing and my results did not look "normal" at all. However, as Bell stated, researchers weren't able to replicate that result. Hey, noboby recruited me for the research study!)

    Anyway, undergoing such a two-day exercise test should really help people provide objective evidence of disability, now that they can point to the research backing up the results.

    Thanks, Karina--I don't subscribe to Bell's newsletter (I can't even keep up with the ones I already receive!
  12. ephemera

    ephemera New Member

    bumping Dr. Bell info
  13. Jeanette62

    Jeanette62 New Member

    Thanks for posting this interesting information. Wouldn't it be great to get a test like this approved to prove our illness to disability companies.
  14. karinaxx

    karinaxx New Member

    carla and all others ,
    i had some thoughts the last days about the value of all the test we are doing and the abnormal results. it would actually be very intresting to collect all abnormal results from people here in the baord and cOmpare it with the research result of the recent years.
    with all these small abnormal test results, it should be possible to make a clear DX for CFIDS , as was stated on the humming bird site. it is ridiculous to say that there are no abnormal test readings, knowing what we now.
    a lot of other DXs are made with a combination of clinical and several test readings combined.

    this is just of the top of my head:

    -Orthostatic Intolerance (treatment : Florinef, Dr.Bell)
    -Low blood volume,(treatment: ? )
    -Low or high NKcells (treatment: Omega 3 fatty acids forhigh Nkcell,immune modulators
    Isoprinosine,Kutapressin)
    -Exercise , cardiac and oxygen readings(Treatment: Dr.Cheney)
    -Neurology: Aphasia, reduced grey matter, IQ testing, ect. (treatment: Dr.Puri,Primrose o.)
    -Rnase L abnormal
    -Abnormal immune panel
    -High EVB, HHV-6,Mycoplasma ect. (ABX or AV, Transfer Factor. alternative meds!)
    -Coagulation problems (Aspirin, ask your doc)
    -Sleep Apnea (treatment CPAP M.)
    -T4,T3 (Hormone panel) (treatment: Hormone replacement?)
    Cortisol
    -Metal tox. ( treatments : Gluthione, Whey Protein)
    -Allergies
    -Gluten intolerance ( treatment : diet restrictions)
    ..........
    ..........

    maybe we could add to this list and we could draw up a list of test which show abnormalties in ME/CFS ?

    just an idea?

    karina

    people actually could go with this list to their doc and demand this test done. i think that would help a lot with choosing some treatment option, as carla said , bit by bit. and it will help GPs to do the little they can, and patients to get a DX, aproved or not.

    THIS INFORMATION IS NOT INTENDED AS A TREATMENT RECOMMONDATION AND SHALL NOT REPLACE YOUR DOCTORS ADVICE!ALLWAYS DISCUSS ALL THE ABOVE MENTIONEND TESTS AND TREATMENTS WITH YOUR GP!!!!





    [This Message was Edited on 02/10/2007]
    [This Message was Edited on 02/10/2007]
    [This Message was Edited on 02/10/2007]
  15. karinaxx

    karinaxx New Member

  16. Lichu3

    Lichu3 New Member

    I wrote about this in a thread a couple days ago but will repeat here. Before I got to read this newletter (Thanks for putting it here!), I had been researching exercise testing for my long-term disability application and came across Dr. Vanness' name.

    He's based at the University of Pacific in Stockton, California. I called them and actually got to talk to him directly. They did the original exercise testing for the Ampligen trials and will also be working with Stanford trials (Montoya) to document functional changes. They are also doing testing for individuals (the deluxe package is $2000 but there are ones that cost less). I think there are some people working/volunteering in his lab who have CFS so they understand the disease very well.

    I think this testing is great as it really shows people what post-exertional malaise is and may help as the newsletter states to weed out people with fatigue from other reasons as post-exertional malaise is a quite unusual symptom.
  17. Lichu3

    Lichu3 New Member

    BBBibyk (sp?) wrote a great thread a couple days ago about putting together diagnostic criteria similar to the ones for SLE where it's a combo of lab/physical/symptomatic findings and you don't need all of them to fit the diagnosis. Many researchers have stated that the U.S. CFS definition is one of exclusion (meaning we get a LOT of heterogeneity) whereas the Canadian one is an exclusive one emphasizing more neurologic symptoms and post-exertional malaise.


    I agree with this provided we have enough research data on large numbers of people with this disease -- I'm not sure how many people were in the studies for each of the lab tests above. What would be great is if the government could fund a study gathering lab results or drawing blood from us already diagnosed with the disease.
  18. karinaxx

    karinaxx New Member

    your absolutly right on the thing about exclusion.
    it is a waste of money and blood (ha, we dont enough anyway)

    if we give people here, new on the board, an idea what they can be tested for and this tests will actually show up with abnormal results, than it would kind of start a grass root campaigne, since doctors will get "the idea" if they see hard evidence, instead just tons of test which will show nothing.
    it took me a while reading through all this difrent findings,doctors, researchers and it could have been so much easier....

    i must have missed this post of Bl.. what name exactly?

    ciou karina
    [This Message was Edited on 02/11/2007]
  19. Mikie

    Mikie Moderator

    For posting this. I wish I had been able to go as it's so close but I just wasn't healed enough at that time from my gb surgery and root canal.

    In terms of viral testing, I thank God my own doc was willing to prescribe the Famvir after we discovered, by chance, that it was killing off something; I was Herxing and then feeling better. The original Rx was given as a preventive for facial surgery. I went into a temporary, but complete, remission after taking it. Unfortunately, HHV-6 doesn't respond well to most AV's. That's why I started to take transfer factors. The TF 200 sold here (which now has a different name) does target both strains of HHV-6. After I started the TF's, I had a huge immune response and Herx. The Herx made me feel as though I had ashes in my body which were being purged. It was a strange and new sensation.

    In terms of the mitochondria, Dr. St. Amand's book, "What You Doctor May Not Tell You About Fibromyalgia," does a good job of explaining the Krebs cycle in simple terms and he uses diagrams. He believes that our mitochondria are defective at removing the phosphate debris produced when the mitochondria produce ATP for energy. It's like a car with a plugged up tail pipe where the exhaust cannot escape. Whether he is right or not, his descriptions help to understand the process. Also, the web contains many graphics and descriptions of the Krebs Cycle. If one doesn't get caught up in all the chemical processes involved, it is pretty easy to understand.

    Again, thanks for the info on the meeting.

    Love, Mikie
  20. Mikie

    Mikie Moderator

    Thanks! He is almost 35 pounds at 18 months. He even acts like a much older baby. There is a little girl in our condo bldg. who is just like him. She's a big kid and very advanced. I'm trying to arrange a marriage :)

    Love, Mikie