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NEW by Dr. Lerner - ME/CFS Treatment Resource Guide for Practitioners & ME/CFS video

Discussion in 'General ME/CFS News' started by anncavan, Mar 20, 2012.

  1. anncavan

    anncavan

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    Hey everyone,
    Wanted to share some new ME/CFS resources with you. They've just been added to the Dr. A Martin Lerner Treatment Center for CFS website www.treatmentcenterforcfs.com

    The video is about 1.5 hours. Goes into the detailed science/mechanism of a virus. In my layman terms, I take away that Dr. Lerner believes it is the abortive nature of the replication that prolongs/aggrevates our immune deficiency.

    The last link I have there is for a new Treatment Resource Guide fo Practitioners he's put together. It's a step-by-step in diagnosing, treating and managing CFS with Dr. Lerner's protocol.

    Video Part 1 A Primer on ME/CFS - http://www.treatmentcenterforcfs.com/video/2011-prt1.html
    Video Part 2 A Primer on ME/CFS - http://www.treatmentcenterforcfs.com/video/2011-prt2.html
    Video presentation slides - http://www.treatmentcenterforcfs.com/video/documents/Dr.AMLerner-PrimeronMECFS.pdf
    ME/CFS Treatment Resource Guide for Practitioners - http://www.treatmentcenterforcfs.com/video/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

    Best,
    Ann
    fla, allyb and Little Bluestem like this.
  2. madietodd

    madietodd Senior Member

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    What bugs me about all of the CFS 'ability' scores is that they forget about brain fog. They all want to know if I have the stamina to work a job and/or do housework, but how would I know? I can't think straight.

    And I rarely take naps, but I spend a ton of time lying on my bed (computer time) or sitting up and reading.

    Grrr.
    ahimsa likes this.
  3. maryb

    maryb iherb code TAK122

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    Ann thanks so much for posting this, very informative and useful.
    anncavan likes this.
  4. alwayshopeful

    alwayshopeful

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    Yes, Ann, thanks for posting this. I immediately printed out the last link to give to my Doc. I have been begging for many of these tests for several years now, but can't get anyone go along with them. I will personally hand this to them and demand some action.
    anncavan likes this.
  5. anncavan

    anncavan

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    Hi madietodd,

    I appreciate your comment. I've talked extensively about this with Dr. Lerner. That is what he means. If you can't do the work, you can't do the work. And re naps, if you require resting, lying down, etc, then you're not in a "healthy" or "productive" place.

    His intent of creating his EIPS system was to have a simple tool/language. If you caveat and list every activity you could possibly do, the document would be too long to read and too hard to use.

    He doesn't want you to have to fill out a long questionaire at each visit. Some doc offices do and you're exhausted before you've had the chance to talk to the doc. It's more of a temperature check.

    If you are sitting/laying down/sleeping ie. not up walking around you are not having a "good hour" so don't count it. If you aren't up and productive more than say 8 hours a day, you're not "out of" disabling CFS yet. I can walk into his office and because I know that when I add up all the time during the day that i wasn't either on the couch or in bed it added up to 3.5 hours, I'm a 3 and that makes me disabled. He also has so many patients that he knows just instinctively where all the 3's are and what that means. Is only there as a tool.

    If it's more bother than it's worth, take it or leave it. Was just very helpful for me to give me a short cut in our language that my doctor and I could easily understand together.

    Hope this helps/clarifies a bit. As with everything, it's just there to be an option to help people.
    justy likes this.
  6. Desdinova

    Desdinova Senior Member

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    It bugs me too yeah I can work a full time job not much else besides that. But when your brain fog is so bad you make mistake after mistake on the job those mistakes eventually add up and have negative consequences.
  7. Ocean

    Ocean Senior Member

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    I like your explanation. I wish his chart would say the same, like say "one hour of feeling well enough to be active" instead of "one hour out of bed (sitting in chair is out of bed)"

    According to your explanation I'd be at about 0 some days and .5 most days. Reading his chart literally, I'd be 3 or 4 because I may be on the sofa for hours instead of only the bed. Yes I'm basically reclining while on the sofa and am still not doing anything while there and still feeling unwell.

    Thanks a lot for posting the pdf, I'm getting ready for a dr. appointment soon and I hope it comes in handy for taking it to my visit and showing my doc.
    ahimsa likes this.
  8. CBS

    CBS Senior Member

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    Ann,

    Thank you for posting both the materials and the videos. I'm only through the first video but it is clear that Dr. Lerner's work with herpes viruses and abortive lytic replication seems to provide a great deal of hope for sensitive and specific biomarkers as well as a much better understanding of the pathogenisis as well as the treatment possibilities in ME patients. I also appreciate his willingness to avoid the use of the term 'CFS' as misleading and minimizing. His ideas about the mechanism leading to ME diverge fairly sharply with those that feel 'CFS' is primarily either autoimmune in nature or that it is a disease caused by a so called 'signaling disorder.' There is a lot to think about here. Again, thanks for posting.
    anncavan likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks for posting. I think Lerner has a big piece of the puzzle for many of us, i just hope we can find the rest of the pieces.

    cheers!!!
    anncavan likes this.
  10. madietodd

    madietodd Senior Member

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    Ann - Thanks for your explanation of how someone like me could use Dr. Lerner's chart. I'll take another look at it as soon as I get over this flu.

    Madie
    anncavan likes this.
  11. Sasha

    Sasha Fine, thank you

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    Thanks for posting this, ann - it looks very interesting but unfortunately I struggled to understand Dr Lerner's talk on the video and had to give up - it was way over my head. I looked at the diagnosis and treatment document but it doesn't mention any of the abortive lytic replication stuff at all, although in terms of treatment it focuses heavily on treating EBV, CMV and HHV6.

    Does anyone know of a good summary of this stuff that isn't very technical? I understood enough to be scared about cardiac stuff so if there's any good news about how to treat this stuff and reverse the damage I'd love to see it!
  12. Sasha

    Sasha Fine, thank you

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    Oh - think I've answered my own question (to an extent). Here's an article by Cort from 2010 about Dr Lerner's stuff. I'm amazed this isn't better known - he seems to be getting patients much, much better (some "cured") using Valcyte. I hadn't realised that Valcyte was so effective in ME - am I missing something?
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think its a matter of staying on these antivirals for a long time so that these viruses eventually die off, the av's only stop there replication so it takes time to irradicate these infections. I think there is also a place to treat other abnormalities that occurr due to these infections like hormonal abnormalities from the long term stress it places on the body eg adrenal fatigue as well as antioxidants to treat the oxidation that occurrs etc. I also think that maybe these people are a sub group of cfs/me as i think there can be other causes. Personally i think we have an immune defiency and this allows certain infections to take a hold like herpes infections, but this is just my view.

    cheers!!!
  14. SOC

    SOC Moderator and Senior Member

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    I agree. It seems that the infection that takes hold causes most of the symptoms. I hypothesize a genetic immune abnormality in my family that allows herpes viruses to take hold. Our success rate with Valcyte and Valtrex is very good -- two full remissions and one substantial improvement, but other people have not had the same kind of success, so it's not universally beneficial.
  15. Cort

    Cort Phoenix Rising Founder

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    Hope to do a review of this Sasha...

    I don't know why we don't hear more from these patients....It obviously really helps some people....I'm trolling for recovery stories....doing a review of them......any body out there?
    ggingues likes this.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Cort, i dont know if i could call myself recovered. I have gone from struggling to work part time to struggling to work fulltime. My condition i suppose is stable as this condition will let someone, but its still up and down. I put most of my improvement down to antivirals and the rest to treating adrenal fatigue, symptoms of insomnia but still have ongoing issues with chronic sinusitis which im starting to get the upper hand on. My activity outside of work is limited but i know im functioning better then most, but im not happy with the level of my function which is why im always looking into ways to improve. I think there is a quite a few like me around that are still bugged by symptoms but would probably be classed as recovered under dr lerners scale. It seems that we always have to be careful of what we do as we can easily fall off the perch.

    cheers!!!
  17. Sasha

    Sasha Fine, thank you

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    Thanks, Cort - the best info would be to have data from an RCT or at least data on the % of Valcyte patients who get some recovery, and the extent of that recovery (i.e. follow-up data on all patients treated by Dr Lerner - I've actually forgotten overnight whether he provided this! - and other doctors who are using this.

    Individual anecdotes, while interesting, don't give any clue as to how helpful a treatment is going to be for other patients. Also, if someone has had a good recovery from Valcyte or anything else, they're very unlikely to be following Phoenix Rising. We need data based on all patients treated.

    I'm hoping that that project that Dr Klimas and the other leading ME docs were starting up, with them getting loads of data from each patient they are treating in a systematic way so that they can later data-mine, is going to pay off with info like this. It's nuts that all these doctors are treating all those patients and yet the rest of us don't have any data based on all that experience that we can show to our own docs and start to get treatments like Valcyte, if they're effective.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    yes its hard to tell subjectively. For my own benefit i will stop and start a treatment several times to see if symptoms worsen when stopped and improve when restart treatment. With antivirals i have had an improvement in my lymphocyte subsets which worsened when i stopped them which also correlated with my subjective feelings. Until they have some good biomarkers, we dont have alot of ways to measure progress.

    cheers!!!
  19. Jenny

    Jenny Senior Member

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    What dose of Valtrex have you been taking SOC? The same that Lerner recommends?
  20. KC22

    KC22 Senior Member

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    I am a Dr Lerner patient. I have been with him for 4 years. I was treated with valtrex for my EBV. I was treated with valcyte for CMV and HHV6 and doxycyline for mycoplasma pnuemoniae. I started as a 1 on his energy index. I am now about a 4.5. I could not hold a job or do anything on a consistent basis, but there is noticeable improvement. I can go out and do something once in awhile and feel "normal. "My family notices a huge change in me. As I could not attend any holiday functions unless I went and laid in bed. Now they can pretty much count on me being there.

    My cognitive abilities have improved noticeably. My tachycardia was improved. I still get the flu like malaise, but not everyday like before.

    I was taken off valcyte the last visit, mid Jan. Not because Dr. Lerner wanted to take me off, but because insurance stopped paying and it is very
    expensive. I feel like I have had some withdrawal from going off valcyte after 4 years. I am going to ask Dr. Lerner about it on my next appt. which is this
    Weds.

    Did I think if was worth it?? Yes, I do! My quality of life is much better. Yes, there are still ups and downs, but now I least I have some ups where before there were none.

    From being around his office and talking to the various people we have met along the way, my unscientific observation is that the young people have the better recoveries.
    The few young people I know, I have gotten to a 9-10 on his scale. The people in their 50-60's have all improved, but not to that number. One is an 8, another a 7 and me a 4.5. It seems like everyone jumped about 3 or so on his scale. Being I started lower, I still went 3 or so, but am not a 7-8 yet.

    Also, I have the co-infection of mycoplasma which he says are harder to treat. The other people I know only had the viruses. They have a better chance of recovery.

    If I were a young person, I would find myself a way to Michigan.

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