1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
Discuss the article on the Forums.

ICC Primer - International Consensus Primer for Medical Practioners

Discussion in 'General ME/CFS News' started by Bob, Oct 4, 2012.

  1. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,236
    Likes:
    1,609
    Australia
    It all comes down to chicken vs egg. Over time, with more eyes on the job we can come up with more specific subgrouping.
    WillowJ likes this.
  2. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,957
    Likes:
    8,156
    Amersfoort, Netherlands
    It would be nice to having something shorter as well, for GPs that can be useful in the typical 10 minute appointment. Maybe two pages, so it can fit onto the back and front of a single paper, with just the essential points.
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,278
    Likes:
    6,204
    USA
    This may be where we have to do the work that our GPs are too busy (lazy? disinterested?) to do themselves. Come in with the full document and a single sheet focusing on the issue you want to deal with that day. Maybe even a highlighter could do the trick.

    However, in my experience, that's not likely to work for most GPs. I've tried bringing them the limited information, but then they say the treatment isn't justified by the condition. I tell them that to understand the whole condition, they need to read the entire document, which they claim not to have the time to do. It's a no-win situation until our GPs are self-motivated, or required by superior agencies, to unlearn the misinformation about ME/CFS and get educated about the truth.
    Valentijn and jimells like this.
  4. Nielk

    Nielk

    Messages:
    5,106
    Likes:
    4,685
    Queens, NY
    This is where the CDC website can come in so very handy. If instead of their misleading, antiquated "toolkit", they would have a new revised up-to-date one, it would make all the difference.

    I think that most GPs take the CDC as the medical bible. I know that my GP does and when I first came to him with all my issues, he told me "you either have depression or CFS but it doesn't matter which one because they are both treated the same way - with anti-depressants". This was the start of my downfall.

    I don't know what can be done for the CDC to take action but, GPs would take stock if they would update their website to in line with the CCC or ICC and it would mean so much more than handing a sheet of paper of our own to our physician.
  5. SOC

    SOC Moderator and Senior Member

    Messages:
    5,278
    Likes:
    6,204
    USA
    So true!

    I wonder, since the CDC can apparently override Sec'y Sebelius' suggestions regarding change at the CDC, perhaps we need to take the next step and, as a group, ask the President to look into the problems ME/CFS patients have with the CDC.
    Nielk likes this.
  6. jimells

    jimells Senior Member

    Messages:
    352
    Likes:
    434
    northern Maine
    There seems to be good info in the document, but the formatting is very weak.

    I can't understand why they chose to jam stuff together on one line. Whitespace always improves readability. A busy clinician, even one that is highly motivated, would have difficulty finding the suggested treatments. The bullet-point lists and charts of treatments used by the IACFS/ME Primer are much easier to read. If the information isn't easily accessible, it's useless.

    I strongly disagree with their decision to leave out dosage information. The caveat to start low and go slow should be sufficient warning - why should a clinician have to go to a differenct souce to get dosage? I certainly don't expect, or even want, for them to memorize all that stuff, since that can easily lead to mistakes.

    I think it might be better to have brief descriptions up front, with the more researcher-oriented detail in a separate section at the end of the document.

    Overall, I think the IACFS/ME Primer is a better foundation for building a truly useful document.
  7. Marlène

    Marlène Senior Member

    Messages:
    441
    Likes:
    210
    Edegem, Belgium
    The cause of MS is also not yet established and still it is MS.

    Let's say you break your neck whether by falling of a bike because of a stone on the road or by being hit by a car while biking, you still have a broken neck.

    If we agree that M.E. is myalgic encephalomyelitis, then the causes can probably be multiple. Viral, bacterial, ...
  8. Nielk

    Nielk

    Messages:
    5,106
    Likes:
    4,685
    Queens, NY
    Given the extent and the experience with ME/CFS of the doctors on this international criteria panel, I can't see how anyone can criticize the content.

    If we don't trust this independent panel of experts, who could we trust? Certainly my own minuscule non-expert experience with this illness can't even touch the knowledge of these experts.

    In my opinion, if we are not going to start recognizing and standing by the experts who are working with us, pretty soon, no one will want to stand by us.

    I understand having a discussion about it or opinions about it but a blank statement to say that they are wrong is just not acceptable.
    WillowJ, justy, Tally and 5 others like this.
  9. snowathlete

    snowathlete

    Messages:
    2,020
    Likes:
    2,059
    UK
    I donno, with all that we dont know about our illness(es) I cant see any criteria like these being that correct. Its really hard to change anybodies mind on things, its the nature of being human, and there are so many weak points in all these criteria. Thats the problem isnt it. If you create criteria on only what we know for sure, you end up with a big group that is compossed of people who have several different illnesses, and versions of illnesses, and overlap with other things, and nobody is happy with that.

    So we try to narrow it down, but narrowing down the criteria based on research that hasnt been verified and repeated sufficiently is a risky business. Not just because its easy to pick holes in, but because it might actually turn out to be wrong.

    Better, in my opinion, to narrow things down as far as we can safely do, and then specify that certain research suggests a better level of granularity, but that it needs to be investigated further. At least then your criteria is something that people can, with reason, adopt..and most importantly, move with as it progresses along with the science.
    heapsreal likes this.
  10. Bob

    Bob

    Messages:
    7,866
    Likes:
    9,631
    England, UK
  11. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,777
    I wonder why the CAA posts that “several of those authors have released a primer for ME.” The document itself reads:

    Primer Consensus: “The authors, representing twelve countries, reached 100 % consensus through a Delphi-type process.”

    Funding: “This Primer is free of sponsorship. All authors contributed their time and expertise on a voluntary basis and no one received any payment or honorarium.”

    I am so very grateful to these authors!
    justy and beaker like this.
  12. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    178
    Rotterdam, The Netherlands
    MS is not lumped together with other diseases like Lyme.

    The importance of distinguishing one disease from others is that they all require different treatments. If you break your neck, doctors will first establish how it was broken before they will try and heal you, too.
    Firestormm and taniaaust1 like this.
  13. mfairma

    mfairma

    Messages:
    21
    Likes:
    53
    This forum doesn't allow me to give NielK's comment above multiple likes, so please consider this a second like in favor of NielK's comment and moderation and sensibility more broadly. If we burn every bridge, we will find ourselves soon alone.

    I have not yet read the Primer, but as a patient of Dr. Klimas, of whom I have tremendous respect, I expect this document represents a useful addition to medicine, at the very least.
    Tally likes this.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,619
    Sth Australia
    I read this last night (got wiped out reading it so ended up spending the rest of night in bed so only are having a chance to comment now). Im amazed at how great this has been done... I dont think better could of been done at this point of time.

    I personally dont think they could of done this primer any shorter without leaving out much very important stuff which a doctor who has a ME patient needs to know (as many cant access a ME specialist and hence are reliant on their GP, there really needs to be a lot of info in the primer).

    One thing I really liked about it too is how they done the different parts of it so they stand out, so that even if certain things arent in the Index, one could find those parts fairly easily eg the colours and headings down the side of the pages like what they've done for the page on the "assessment and diagnoses. ICC" and the clicincal assessment worksheet, both which have green all down the side.

    It has simplied graphs which any doctor can understand at a glance eg the one of page 13 on the management and treatment. A patient could show any doctor in the shortest appointment that graph to get the doctor really thinking about what could be done. So I think thou this document is very large, it could be of great help for any doctor even for a 15 min appointment due to the clarity of this document eg in index.., it has thinks like other considerations eg surgery, pregnancy etc which allows a doctor to immediately go straight to things like that if they have relevence to you.

    Yeah most doctors would not read the whole thing but reading the whole thing is probably not necessarily when it comes to being able to help their ME patients more and give them more confidence in trying to help us.

    This is a the first document Ive seen which caters more also for the severe group of patients eg saline Ivs are actually mentioned first in the pharmacutical treatments for ME. Thank you, thank you.. hopefully this document will help me to get my CFS specialist to start giving me the treatment Im needing (after trialing so many other things to try to raise my blood volume enough).

    Thank you for all that have worked on this document. Im feeling so grateful.
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,619
    Sth Australia
    The International Consensus Primer is intended to help distinguish ME patients from CFS patients!!

    The CCC was confusing as the term CFS was still being used eg ME/CFS with it even thou with the criteria being used, those would of been ME patients not CFS patients.. I'll quote a couple of parts from the new ICC.

    Under heading "International Consensus Criteria"
    "Problem"
    "Solution"
    [
    [/QUOTE]
    So yes it is designed for also ones GPs to be using as well as for research.
    ....................

    This document is great as it will start to enable there to be actually true ME research rather then ME/CFS research which is a mix of patients with all different things. If you have ME and dont have CFS.. this is the thing you should be copying to take to the doctors with you.

    A few more quotes from this document

  16. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,777
    When the ICC was published, I conveyed Nielk's sentiments to Dr. Carruthers. As soon as I'm stronger, I plan to pass on your note of thanks as well. Dr. Carruthers' commitment to patient welfare has been truly remarkable over the years. His medical practice recently closed.
    Nielk likes this.
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,619
    Sth Australia
    Thanks Ember. I'd really appreciate it if you could pass that on my thanks for me :D (I personally even choose to go to jail at one point so I could be fed etc as I couldnt care for myself at home and it was the only way I could think of in which I could get the care I needed.. I only was only there for a few weeks thou. The unable to get treatment and care, led to that level of desperation to get my basic needs meet. I now fortunately get gov paid home support).. .. thanks
  18. Marlène

    Marlène Senior Member

    Messages:
    441
    Likes:
    210
    Edegem, Belgium
    I'm not a specialist in MS but as far as I know, Lyme can induce MS symptoms.

    Secondly, getting a personalized treatment when breaking your neck is required in ME too. We are all unique individuals with unique backgrounds and genetics.
  19. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,957
    Likes:
    8,156
    Amersfoort, Netherlands
    Actually I did that with the Dutch version of the CCC guide, when I was trying to get my OI diagnosed and my ME "specialist" was being a turd. I'd highlighted the OI bits. My GP didn't have time to read it then and there, but she asked if she could keep it. She was comparing ME with MS on my next visit, so I think she had a thorough look :p
    WillowJ and Dolphin like this.
  20. Bob

    Bob

    Messages:
    7,866
    Likes:
    9,631
    England, UK
    My local region's ME 'specialist' thought that I should feel malaise/fatigue only after exertion.
    He almost didn't give me a diagnosis, because I said I had malaise all the time. (i.e. the severity of my symptoms increase after exertion.)
    In the end, I just agreed with him and said "oh, yes, that's right; 'after' exertion", and he looked satisfied and ticked his box.
    :rolleyes:

    Edit: And then he offered me CBT and GET :rolleyes:
    Dolphin, clive powney and justy like this.

See more popular forum discussions.

Share This Page