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The Treatment Showdown : CDC Toolkit vs IACFS/ME Primer

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 24, 2012.

  1. CJB

    CJB Senior Member

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    Cort, I so look forward to your replies on these article threads. The non-sequiturs are hilarious and fun. I hope this never gets "fixed". It's cool to see what the computer seems to randomly dig out of the archives.
     
  2. MishMash

    MishMash *****

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    I'm not surprised by the primer's lameness. No doctor worth his salt is going to rely on CDC info to treat a condition as nuanced and complex as CFS. It's written by bureaucrats. The CDC is good at monitoring the latest flu bug coming from asia, recommendations about obesity, how to avoid seasonal allergies, etc etc. The stuff you and I can read on yahoo.

    Every serious CFS patient at this point should have his own informal "Anarchist Guide to the Universe." Meaning you have to use Machevillian tactics to manipulate the medical system to service your illness needs.

    Foremost among my guerilla tactics are: 1) Doctor shop as much as you can till you find a MD who believes you, with whom you have a good personal chemistry. Nurture that relationship, just like a saleman would with a long-time client. 2) Make yourself sound as urbane, witty, interesting as possible. Keep emphasizing to him how you can't wait to get off of disability to continue your fantastic professional career. Talk about the days when you were a powerful CEO or Delta Force commando. 3) Get as many test results as you can showing *physical manifestations* of this illness. Nothing will get a new doctor's attention as much as a list of reactivated viruses, for example. They probably won't take a lengthy list of fatigue, weakness, or dizzyness symptom as seriously. Make the disease sound as acute, vs. chronic, as possible. 4) keep every single medical record in easy-to-read and cogent order. Don't just dump a bunch of unabridged test results on his desk. If possible, get summaries of immunological test results, because doctors have about 5 minutes to devote to your incredibly complex illness. 5) At each appointment don't sound too hopeless, lethargic, or apathetic. Sound motivated and anxious to improve. Bring up the latest research (such Rituximab) as a point of interest, but act suspect and unenthusiastic. There's a good chance he'll take the bait and get interested himself.

    Doctors are people and they can be manipulated. I consider this to benign, reasonable manipulation. They way you have to manipulate your mechanic to do a thorough job on your transmission. They respond to basic human instincts. All that stuff you hear about how they are completely impartial and professinonally attentive to every patient is utter nonsense. They are like parents, who claim they love all their kids the same, but they don't.
     
    justy likes this.
  3. Fred1234567

    Fred1234567

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    A great site and a great review!! You've done it again Cort!!! The Primer is a great start BUT - needs to add non drug stuff and address the severely ill (maybe you don't have so many severely ill in the USA anymore as GET/CBT isn't so widely preached??). Oxygen and saline 2 very helpful therapies and dietary restrictions. It seems on the diet that the Royal Prince Alfred Hospital- Melbourne, Australia has a great elimination diet that can help you identify new food intolerances that cause gastro issues and a receipt book Friendly Foods to go with it. For people with IBS there is a different diet called FODMAPS - cutting out sugars etc that seems to help. (you can't do both at once as you have to EAT0. Neither diet a cure but if you have food intolerances they can help alleviate symptoms.

    I am reluctant to give the primer to my doctors as IV saline and oxygen are not mentioned despite them being the most helpful things!!!
     
  4. Fred1234567

    Fred1234567

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    Wear pyjamas to Dr visits if you are severely ill!!!

    i.e. try to look as sick as you are!!! It does help!!
     
  5. Cort

    Cort Phoenix Rising Founder

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    I don't know...it seems that most of the attention is still on the CCC; it's been around longer and I think people know it more - I think that's why these more organized efforts are focused on it...
     
    Firestormm likes this.
  6. Cort

    Cort Phoenix Rising Founder

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    I agree there is still a ways to go...Saline solution is not mentioned - although many people who see enlightened doctors now use it. I know of someone who did great on Xafaxin - not mentioned...There's nothing on probiotics...the Immune side is almost completely ignored - nothing on any of the antivirals, oxymatrine, isoprinosine, etc...Nothing on propanolol or atenolol for OI...not having xyrem in there was really strange - since that drug is pretty well known; they must have considered it and then left it off for some reason...Honestly I would have included Amygdala retraining for stress reduction....

    The primer is not necessarily done by the way; they are still asking for responses and tweaking it.

    Still a huge improvement over the toolkit and an eye-opener, I imagine, for any physician who knows ME'/CFS only from the Toolkit.
     
  7. Cort

    Cort Phoenix Rising Founder

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    I had forgotten about saline but agree that its surprising that its not in there. I know that Dr. Peterson, Dr. Klimas, Dr. Bell all use it regularly and its safe and pretty effective in the short term..that and no xyrem were kind of head-twisters...I would shoot them a email asking them to put it in...the Primer is not done from what I've been told...Maybe we should make a list here of suggestions...
     
    taniaaust1 likes this.
  8. Fred1234567

    Fred1234567

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    I agree Cort a list of suggestions/recomendations -
    More focus on the 25% of people that are severely ill, these people are so ill they often can't access health care and yet given the severity of their illness they need the most help.

    In my opinion if a treatment has/does help some ME sufferers it should be in the primer. There are many many examples of other diseases for which no all drugs work. I am frustrated that the ME community seems to expect a one shot FIX for all ME patients. This is more stringent than the effect of most drugs/treaments ....

    Oxygen - helps with brain tissue hypoxia and helps the neurotransmitters so I am told.
    Saline - well documented to help with POTS and severe ME.
    Drugs a list of all that may help.
    Dietary specific details how to test eg Royal Prince Alfred Elimination Diet, Melbourn Australia to identify intolerances to gluten/lactose/amines/glutamate and saliclyates (Friendly Foods receipe book)-about $84 for both and can be ordered on line.
    FOFMAPS diet- for irritable bowel syndrome.
    ....
     
  9. Anne

    Anne Senior Member

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    Cort, is there any chance you could expand this great post with a comparison between the IACFS/ME Primer and the booklet version of the Canadian Consensus Document (see http://www.rme.nu/sites/rme.nu/files/me_overview.pdf)? The CCC overview also has treatment suggestions etc and it would be very interesting to see how the two differ.

    In Sweden, we have previously sent out the CCC overview to doctors, but we are now considering changing that and sending out the IACFS/ME Primer instead. A comparison would help us greatly in our decision!

    A drawback with the Primer is that, as of yet, it's not available in a booklet format (to buy, like the CCC overview booklet/brochure). One has to print the Primer and staple it, which doesn't give as professional an impression as a proper booklet.
     
  10. Fred1234567

    Fred1234567

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    The Primer needs to cater for the severely ill as otherwise we will be forgotten.
    A section on how to minimise the impact of a hospital visit- eg use a bed trolley, wait away form noise, let carers do most of the talking ie minimise time with the patient. Dr's don't realise how much telliing them our medical history takes out of us. I have been allowed to wait in an empty nurses station, a cupboard, a spare office, the back of my car in the carpark, an isolation room and a kind specialist event kicked his colleague out of a room so I could wait in there!!!! All these patient needs need to be included in the Primer....

    It was clear that I had ME after 3 months of being ill- as the ICCC state why wait an arbitary 6 months this is NOT required for any other serious illness. When you meet the criteria for ME you have ME. If you don't meet the criteria for ME as defined by the ICC or Canadian Guidelines then you either have atypical ME or a different disease. Many other diseases recognise atypical forms of the disease.

    Lets get the CONTENT of the primer right before getting it printed. A bummer that 17,000 copies have been sent out already!!!!

    This site is fantastic and gives us all hope.
     
  11. taniaaust1

    taniaaust1 Senior Member

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    Thanks for thinking of Probotics. Probotics are a helpful thing for some and with the amount of us who have bowel issues.. it certainly should be mentioned and esp since safe too. No reason at all for them to leave that one out and it is commonly suggested by medical professionals for IBS. http://wwcoco.com/cfids/bernesx.html The stastics for IBS in ME/CFS is 50-90% of us.. so that symptom should be being recognised and have some treatment suggestions mentioned for it in the primer. eg fibre supplements and probotics would be the sensible things to have mentioned.

    Primer should be covering all common symptoms of our illness. (the above link with stats gives ideas on these things).. Primer something a doctor can look at and feel more confident with dealing with the large group of symptoms we have, help them to see treatment of all our symptoms doesnt have to be hard.... No doctor should be shrugging his/her shoulders and saying "there is nothing which can be done for ME/CFS and you". (I had to go to a bowel specialist before probotics were mentioned to me, they didnt help me but Im still glad I tried them).

    Thanks to for saying its not necessarily done yet as it gives me hope that this will maybe made much better. I really hope there will be a lot more added to it.

    I understand they cant include everything in a Primer but how about giving doctors a few treatment options for each symptom (too many options would end up confusing doctors on what to do so a careful balance of things needs to be there)..

    but the subgroups with this illness shouldnt be forgotten either eg (I dont know if that primer included some common FM drugs for those who also have FM. a large group of us have coexisting FM too but if it dont include some FM drugs for that group, it should) . Also antivirals need to be mentioned at least for the subgroup of us who have issues with the viruses, it would be terrible for that not to be mentioned at all.

    So basically 3 faults currently

    1/ Many "common" ME/CFS symptoms being left out
    2/ Severe group not being catered for
    3/ Subgroups of ME/CFS not being catered for
     
  12. taniaaust1

    taniaaust1 Senior Member

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    maybe making a list of things which they should think about including would be a great idea. It seems they could do with more patient imput. As we have the illness ourselves.. we know what is being used and what is or not helping our patient group.
     
  13. Cort

    Cort Phoenix Rising Founder

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    I was just informed that the Primer is undergoing a review right now - expect some changes.
     
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  14. Cort

    Cort Phoenix Rising Founder

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    They do add something in an unexpected way...a bit of frivolity or something....I expect they will keep coming since I don't think we have a clue what's going on...:)
     
  15. Firestormm

    Firestormm Guest

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    Having now listened to the last Ciffsack (CFSAC) meeting in June I am suddenly awakened to the potential importance of this Primer from IACFS/ME.

    Boy. My fellows across the pond really do have it bad. Whilst we here in Britsville have the NICE Guidelines (not perfect but in the hands of all NHS Doctors and others associated with the diagnosis, management and treatment of CFS/ME) i.e. a central framework; you guys don't have anything.

    I had no idea. I find it quite shocking to be honest. So Ciffsack have recommended unanimously that this Primer be endorsed by the Health Secretary - correct?

    Whilst I have read of your concerns about the effectiveness or power of Ciffsack in influencing your central state organisations - a move to provide some framework have to be welcomed.

    Now that I recognise the importance of this document I've downloaded it to read. I understand from the meeting that this goes further than our own NICE Guidelines and I am very conscious of how hard it will undoubtedly be to implement this document in full.

    I still cannot believe that e.g. Fukuda has not been adapted/rolled out to all your physicians along with guidelines for the management and treatment of this condition.

    Stunned.

    I shall return to the thread once I've read and digested...

    http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
     
  16. Firestormm

    Firestormm Guest

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    I posed the question to CFIDS on Facebook wondering what their thoughts were on this Primer and the recommendation from CFSAC. An interesting reply I thought:

    Any further thoughts guys?
     
  17. Firestormm

    Firestormm Guest

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    I am now thinking this Primer is a complement to the Canadian Consensus. Am I right? Whilst I have yet to read the document in full I can't help but notice the names involved. If it didn't complement the CCC I would be surprised. Also, I wonder if the intention is therefore that the CCC is used for research and this Primer for clinical diagnosis?
     
  18. Firestormm

    Firestormm Guest

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    From the August 2012 IACFS/ME Newsletter: http://www.iacfsme.org/NewsletterAugust2012/tabid/512/Default.aspx

     
  19. Ember

    Ember Senior Member

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    Although it uses the CCC, the Primer (unlike the ME/CFS Guidelines) fails to advise that GET is contraindicated for ME patients. Instead, it limply suggests that “consultation with rehabilitation professionals knowledgeable about ME/CFS may also be desirable” and that a graded activity program may “assist in rehabilitation:”
    Though it warns against triggering PEM, the Primer doesn't warn that GET, in doing just that, risks turning mildly or moderately ill ME patients into severely ill homebound patients, incapable of almost any type of exercise.
     
    WillowJ likes this.
  20. WillowJ

    WillowJ Senior Member

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    I agree that putting it into a CME would be better than the current form, and I have mentioned this here before. Docs are too busy to read something unless they get credits for it. I didn't know about the 'point of use' form but that seems a good improvement, too.

    Seems some of us should write the IACFS/ME and politely suggest this. If they need funding to do this, then we need to look for a source of funding as well.

    NSG would be a good start, as it would seem official there and doctors would know to look there I assume.
     

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