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The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
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New Joliceur Canadian XMRV Study

Discussion in 'XMRV Research and Replication Studies' started by Cort, Jan 9, 2011.

  1. Boule de feu

    Boule de feu Senior Member

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    I'm surprised about the comments that were made on Dr Jolicoeur. I did apply to become a part of his study and the answer I got back was very thoughtful. (He seemed to care.)
    However, I saw Dr Phaneuf twice (on two TV shows) and both times I had the impression that the illness he was describing was not ME or CFS. I felt he was looking at a different cohort... and B-O-B it was not ME!
    (this is just my impression)
  2. Cort

    Cort Phoenix Rising Founder

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    He's described as a microbiologist in one place on the web but I thought he was a clinician as well.
  3. Boule de feu

    Boule de feu Senior Member

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    ... and he shows up as an infectious disease specialist. As far as the ratings go, he is very well-liked by his patients and one of the best. He will go deep down to figure out what is wrong with you. He will take the time to explain what is going on in your body. I'm glad to see that my impression was very wrong. Oops. My mistake!
  4. Boule de feu

    Boule de feu Senior Member

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  5. GaryK

    GaryK

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    Yes please I would love a translation of the interveiw
    Thanks Gary K
  6. Boule de feu

    Boule de feu Senior Member

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    It will be my pleasure! :)
    If it is ok with Cort, I could summarize it here.
    Otherwise, I will start another thread.
    I have something planned tonight, so I will post it tomorrow.
  7. Cort

    Cort Phoenix Rising Founder

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    That would great. Thanks for doing that.
  8. Boule de feu

    Boule de feu Senior Member

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    Dr. Denis Phaneuf - Radio-Canada (Premiere Chaine) interview
    Microbiologist and infectious disease specialist at Hotel-Dieu, Montreal (Quebec).
    May 17

    - It's not an illness. It is a syndrome. A syndrome regroups several not-well defined illnesses which have the same symptoms like fatigue in CFS.

    - Most patients with CFS can do about two hours of "benign" (he probably means light) activities. After that, they will crash.

    - This fatigue lasts more than six months

    - 29% of patients will show up in the doctor's office saying that they are tired but they are not chronically tired.
    Of those 29%, 0.4% have CFS

    - 65 - 70% of CFS patients have fibromyalgia which is muscular pain + attention deficit (problems with short term memory)

    - this is why these patients will be looked at as crazy people (???) because if we say something to them, five minutes later they won't remember what you have told them. This is why others look at them thinking CFS patients are not well (he means "not well in their heads")

    Question : Is it difficult to diagnose someone with CFS?
    - Yes and no. It is a long process. It is difficult to eliminate the other illnesses: e.g. mononucleosis

    - he mentions the Yuppie flu and Lac Tahoe, and that it was mostly young women who had mono.
    The mono can come back (recurring in 4% of the population) and many doctors don't know that

    Then he goes on and talks about scleroderma (a rare disease) and explains that it takes about 12 years to diagnose it.
    It's frustrating for doctors and patients and often they don't want to get to the bottom of things.

    (THERE IS SOME CONFUSION AT THIS POINT: DOES HE TALK ABOUT CFS OR SCLERODERMA - I think he goes back to CFS but the last sentence doesn't make sense.)

    Often, these patients will be sent to psychiatrists because they are depressed about the situation which is understandable because it takes forever to diagnose. Then, they will be checked for thyroid problems - for hypothyroidism which is often found. The basic investigation takes about one year + 6 months of fatigue. One more year for extra tests. 4 years to find out in which prognosis group this person will be and 12 years??? to make sure the diagnosis is right.

    QUESTION: This must be a real challenge for patients since they are suffering for so many years (or months) and they don't know why. It's not all GPs who can diagnose this.

    - They can do it and this is why the medical association has sent them a pamphlet to encourage them to treat these patients and let them know what they can do for these patients (basic care).

    - Doctors like to make a diagnosis, to treat and to cure their patients. They love things that are clear and precise. When treating CFS patients, even psychiatrists get discouraged because it takes forever. It's too complicated. But, things are getting better.

    QUESTION: So, the principal symptoms are a fatigue which lasts and often with pain. Why do we label this disease as psychosomatic?

    (HERE HE STOPS SAYING CFS but TALKS ABOUT CHRONICALLY FATIGUED PATIENTS - CFP)
    - Because we find a true depression in these patients
    - 29% of the population shows a bipolar disorder and in CFP it's 48%. These statistics are interesting but they don't explain the illness. It's a huge difference. It explains some symptoms but it does not explain why we find some anomalies in their blood.
    - We find that the number of "killer cells" is decreased (system of defense is disturbed).
    So the bipolar theory can't explain this. These patients are also "atopic". They have asthma or eczema.
    They have a "reactive" system which is not normal. They have a "bipolar" system which is not normal.
    Other problems will follow like the thyroid will not function properly + intestinal and adrenal problems.
    He uses the expression "maladie en devenir" to explain that it's a disease that evolves. Once you start having these kind of problems, others will emerge as you go along.

    QUESTION: What are the causes? Is it viral? Is it genetic?
    - Let me talk about identical twins. In medicine, we love to study them.
    If one twin is chronically fatigued, you have 38 - 48% chances that the other twin will have it too.
    In non-identical twins, it's 13 - 15%. We can see an important genetic correlation. This correlation also makes sense when we look at the "atopic" problems these patients have like asthma.

    QUESTION: You say that there is something genetic going on. How come I heard there is a viral cause?
    - You are talking about what can trigger it. A "good" trigger is mono. Mono is a good reason (he used "a beautiful disease" when talking about mono) for getting CFS.

    ---- STOPPED AT 8 minutes - END OF FIRST HALF (I'm too tired to keep going - I will continue tomorrow)

    SECOND PART - POST #34
  9. GaryK

    GaryK

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    Thanks Much Boule De Feu :) I know thats alot of work much appreciated :)
    Gary K
  10. Cort

    Cort Phoenix Rising Founder

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    Hey fascinating stuff - looking forward to more when you feel better )
  11. pamb

    pamb Senior Member

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    Thank you Boule de Feu - interesting indeed. Especially as I am likely moving from France back to Canada soon.
  12. Boule de feu

    Boule de feu Senior Member

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    I haven't been able to sit at my keyboard lately (to dizzy!), so it is difficult for me to continue the translating exercise that I have started. However, I plan to start again the minute I feel better. I'll be back!
  13. Bob

    Bob

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    Thanks Boule, that's an enormous amount of work that you've done...
    It's really appreciated, but please don't do any more unless it's comfortable for you.
    Take care,
    Bob
  14. Boule de feu

    Boule de feu Senior Member

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    (SECOND PART FROM POST #28)

    Please note that I am translating AS IS.

    Dr Denis Phaneuf - Radio interview (May 17, 2011)

    At 8 minutes:

    A good trigger is mono. It is a "DNA virus" of the herpes family. It stays in your body all of your life. There is 20% chance that once you had a mono event, you will have another one later. Mono can be associated with other viruses like the herpes virus number 6, a childhood virus. There are 8 types of herpes viruses. We catch the herpes virus number 6 when we are about 5 years old. It's there, it stays there and waits and comes back when we are very tired.

    So, its basic etiology is first hereditary. Then, you have triggers. These triggers will make your immune system "abnormal". In healthy people, when you have the flu, you stay in bed for about three days. You are running a fever. Your immune system already knows that it has won the battle. It won't "attack" as strongly. After five days, you won't feel as bad.

    When you have a "chronic fatigue", and you have the same flu, your immune system keeps going after three days. After five days, it keeps going. Two years later, it will still function as if you have the flu. It forgets to stop.

    We now know a few things about the RNase system and we are working on this but we are not able to stop it.

    QUESTION: So the immune system is part of the problem. But, how can we explain the fatigue? How come CFSers are always tired?

    People that are chronically fatigued have a pretty big "frontal" problem in their brain. Your short-term memory is affected. When they finish reading a line, they don't remember what they have read in the first part of the line. I have lots of patients who can read the same novel a month later because they won't remember what they have read. It does not cost them much. LOL

    This short-term memory effort makes you tired. The ACTH is produced and it goes to the adrenal glands. This produces cortisone which gives us energy. The adrenal glands are so tired that they are producing too little cortisone. We could give CFSers high doses of cortisone but we can't do this because it triggers more health problems.

    QUESTION: What can we do to help these patients? There are more women than men. Do we know if there are more Westeners? And why more women?

    There are more asian people than white people. There are more white people than South Americans. There are more South Americans than Black people. So, there is a genetic component that can explain this.

    There are more women affected by immune illnesses like Lupus. There is "hyper immunity".

    QUESTION: We don't know why it's like this?
    It was probably useful at some point. It had a role in evolution but I don't want to get into this.

    QUESTIONS: What can we do to help these patients?
    The best remedies are the things you can do at home. You can keep active. Go for a 5 or 10 minute walk daily. The extra oxygen that you will intake will permit you to do an extra hour or two of activities per day.

    There is also a strange phenomenon going on. It's called hypovolemia. A normal person has 4.5 liters of circulating blood. CFSers have less than 4. It's not because they are anemic, it's because their bodies don't want to function with more blood.

    STOPPED AT 12 minutes.

    (Sorry about the quality of my written English. Keep in mind this is my second language and it takes me a lot of energy to just "translate", so no more energy to figure out how to write properly. LOL)

    I will keep going next time. Enjoy! =-)

    NEXT PART - POST #38.
  15. pamb

    pamb Senior Member

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    Hey, Boule de feu, as a struggling 'barely student' of French I am in awe of your command of English. No doubt it takes a lot of energy to translate. I had no idea how much until I lived in a culture with a different language. Bless you for the effort - and my, what an interesting presentation. He manages to make something complex very understandable and straight forward.
  16. GaryK

    GaryK

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    Thanks so much from another fellow Canadian, Boule de feu, Wow alot of work and hope your a wee bit better on the dizzy's I know how that goes too.
    GaryK
  17. Boule de feu

    Boule de feu Senior Member

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    Thanks, Gary.
    I spent a bit of time on the forum this morning but did not have the energy (I felt a bit lazy... oops!) to listen and translate. I will try to get it done tomorrow morning. So, stay tuned. ;-)
  18. Boule de feu

    Boule de feu Senior Member

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    (THIRD PART FROM POST #34)

    Please note that I am translating AS IS. This morning, I have a major brain fog and I'm not sure I will do a good job but I will come back later (when I feel less drowsy) to fix whatever is wrong. For the time being, you must enjoy as is... =-)

    Dr Denis Phaneuf - Radio interview (May 17, 2011)

    At 12 minutes:

    Hypovolemia makes CFSers very tired. They can fall easily. If they are standing for seven minutes, they can fall. What do we do? We give them a diet with more salt. You have noticed that doctors never tell their patients to eat more salt, but here it is important to do so. We will ask them to drink more Gatorade. We ask them to wear elastic stockings. We give them some products that will retain the salt in their bodies.

    QUESTION: Do we give them drugs? Are they medicated?

    We look at each symptom. If they have pain, we give them pain killers. Sometimes, this causes a bit of confusion.

    QUESTION: So, as I understand it, there are few solutions?

    Let's not be pessimistic. 70% of the solutions will be found by the patients themselves. The other 30% come from the doctors who will give them medicines and different products. Yes, there are solutions. Some are partial, though.
    The American Army has done some very good research on women who have CFS. They picked a control group and a group of women who had CFS and they made them work with a few personal coaches (for either emotional distress and/or physical problems).
    After one year, 14% of them were able to go back to work. For the group who had an extra psychological help, there were 17% of them who returned to work. So, we can't ignore this small difference (even though it is 3%) when trying to help these patients. It's important.

    QUESTION: Is it possible to heal completely from this illness?

    I am following a group of patients right now and there are about 15% of them who have healed completely (he used the word "gurison absolue"). 70% of improvement, so life becomes interesting. Unfortunately, there are 15% who stay with their symptoms after 12 years. (***Again, he is talking about the 12 year mark. Can anyone explains where this come from?***)

    A QUESTION from a woman who wrote an e-mail:
    Are fibromyalgia and chronic fatigue related? Some days, I see a bit of improvement in my symptoms but there are changing daily.

    When you suffer from chronic fatigue, you have a risk of 65 - 70% of developping fibromyalgia as well.
    If you only suffer from fibromyalgia, you will probably not have the attention deficit. You can read. You can remember things. It's a bit easier. However, the drugs you get will give you a bit of confusion. So, this is why it's changing daily.
    And most patients will be able "to do something" for about two hours.

    An other question from Louise Charbonneau:
    Are "cell phone" towers, wireless wi-fi systems, and objects emetting high magnetic fields can influence this type of illness?

    Usually, we don't go into this debate. But here, it is interesting because patients don't have many answers. The brain is a broth. These patients end up with an intolerance to noise, to light, to sound and some are very sensitive to magnetic fields. I have patients who had to remove or move their electric outlets. These patients are very intolerant to many products. When we administer some drugs, we have to start them at very low dose because they can't tolerate anything.

    QUESTION:
    Is there enough research going on? It's a very complex illness but it's not fatal. Sometimes, there is no cash going into these types of illnesses. Patients can still function.

    There are 800 researchers who are working on this at the present but they all work separately. Here in Montreal, Dr Jolicoeur works on the XMRV virus. He will soon publish his work. It is interesting to see all the separate results but the research is not "conglomerated". (He is saying that everybody is working solo and this is why it takes more time to get all the results). The Government of Quebec takes this very seriously and has met many people. So, this will give a bit of hope to all CFS sufferers.

    Thank you doctor... bla bla bla

    ------
    DONE! Yeah! =-) I can't believe I made it.
  19. Boule de feu

    Boule de feu Senior Member

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    This translation job was not an easy task. Dr Phaneuf repeats himself and does not finish his sentences. He starts on something and then he thinks of something else. It is not easy to follow what he has to say (especially when you are translating).
  20. pamb

    pamb Senior Member

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    Merci beaucoup Boule de feu (I love your name when I took a minute to translate - such humor). Il est magnifique et trs intressant.

    It gives me hope as we prepare to move from France back to Edmonton, my home town. It seems the powers that be are at least waking up to ME/CFS in Canada, whereas here in France, so far as I and John's doctor can tell, there is very mimimal interest yet outside of a couple of one researcher working with yeast infection and bringing his work to patients, and one neurologist who is fond of giving a drug to help people be more awake during the day. Perhaps for mild cases that is useful, but when has pain all day being more awake is not so useful.

    Hope you have a good sleep after your hard work. And hey, maybe if I keep up my French studies in Edmonton I can move to Quebec on day. That would be something :)

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