IACFS/ME Primer for Physicians

[Andrew]

I neglected to post this before, and now I urge you to take action on this. If you have read Wikipedia, WebMD, etc. you have seen that they turn a blind eye to the fact that the Oxford criteria studies are CFS in name only. When the fact is, it is not CFS, in any way shape or form. It is not even a valid variation, considering that it only has one symptom. Unless something is done about this, the "common knowledge" will continue to be based on these studies. What is even more disheartening is when our best medical advocates fall into the same trap. Try reading book by our favorite allies that include a review of GET studies. They ALWAYS fail to point out what the Oxford criteria studies really are.

The IACFS/ME is an organization that is friendly to us. And they are about to release their ME/CFS primer for doctors. If they get this wrong, sitting around here bitching and moaning will not help us a bit. We need to make sure they don't fall into the same trap as all the others. Don't assume they will get it right. That's what we did with CAA, and they ended up promoting the Oxford studies.

Here is the contact info for IACFS/ME: http://www.iacfsme.org/ContactUs/tabid/118/Default.aspx

Here is my letter to them. And remember, it is easier to send a letter now, than it is to write endless threads complaining about this later.

I was recently reminded of the development of the IACFSME primer for health care professionals. I have two areas I wish to address regarding this document:

1. I urge you in the strongest possible way to release the draft version for public review before the process is so far along that additional changes will feel to the committee like an annoying burden. I think we all saw the value of this type of process when the DSM project opened their document up for public review (and even extended it to allow more time for input). It is always a good idea to let all people who have a stake in something be allowed to offer feedback.

An open review process is really not that hard to manage. You could simply post a PDF on the IACFSME site, provide an email address, and let IACFSME members know via email.

2. I am repeatedly disappointed with how even our most compassionate CFS professionals write about CBT and GET. They ignore the fact that the Oxford criteria is not simply one of several CFS definitions. It is a fatigue-only syndrome that either may or may not be proceeded by in infection. It says other symptoms may be present, but it doesnt require even one of them. Yet, every source I read on GET and CBT fails to point this out.

If you are covering CBT and/or GET in your primer, I beg you to not fall into this trap again. I beg you explain to doctors that the Oxford criteria are not interchangeable with the other definitions. I also ask that you explain this at the beginning of your GET/CBT discussion, in a prominent way. And then draw conclusions from the body of research that excludes Oxford studies. And then, perhaps, cover Oxford studies in a separate section. But whatever you do, please dont allow another literature review, summary, guideline, or meta-analysis go out that doesnt confront this problem.

And by the way, I am aware of the weakness of the empirical definition, etc. I am focusing on the Oxford now because I think its the worst offender, and the easiest to segregate.

Heres a copy of the Oxford criteria if you dont have one handy: http://forums.phoenixrising.me/attachment.php?attachmentid=6368&d=1318004959

Sincerely,

Andrew .....

 

[justinreilly]

Thanks Andrew, that is a great idea.

I sent an email, with my own suggestions added. email: admin@iacfsme.org

I strongly endorse "Andrew's" letter to you below, with the following changes and additions:

- Please add a mention that the CDC's Reeves criteria are patently invalid and that CDC is an unreliable source of info and that CCC and ICC are the best sources of info.

- Please use "ME" not "CFS." I suggest starting with ME ("CFS") and then transitioning to ME.

- I think it's best not to recommend GET at all for patients unless they are substantially recovered.

- Mention that PACE can not be relied upon.

- Specify the type of CBT recommended, if you do recommend it: ie supportive, acknowledging limits, pacing; NOT that one has a fear of movement and no physical pathology.

 

[Nielk]

Andrew,

Are you sure that they didn't finish it yet?

 

[Andrew]

No, I'm not sure. I actually sent my email right after the last CFSAC meeting, at which Dr. Jason mentioned that it's in draft form. I have no idea where it is now. And I regret now that I didn't post my email before.

I also sent them an email before they even began writing it, asking only for public review when the draft was released. I figured everything would be covered with that. I felt like I got a positive reaction to that. But when I realized it was already in draft, I got very worried. And now I'm even more worried because I got no response to the email I just posted.

Anyway, thanks for your help with this. I wish more people would take the time to send an email, even a short one. This primer is a golden opportunity to really help us, or screw us even more.

 

[Nielk]

The reason I asked is because I think that Kenneth Friedman from the IACFS/ME was involved in this already a while ago. They had asked artistic people to send in a cover picture for it a while ago. Maybe three months? It just happens that I had just e-mailed him to see how it's going. I haven't gotten an answer from him but when I do, I'll post it here.

 

[Andrew]

I imagine they asked for the picture in advance of completion, so it would be ready when they needed it.

 

[Andrew]

By the way, I wrote my first email back in February 18, 2010

As a member of IACFSME and a patient with CFS/ME, I was pleased to read that Hemispherx Biopharma, Inc is providing support for an upcoming workshop to develop clinical guidelines for chronic fatigue syndrome. Because oversights in so many well-meaning guidelines in the past resulted in disappointment (and even anger) from people who suffer from Chronic Fatigue Syndrome, I urge you to post a draft of the guidelines for patient review and feedback before it is finalized. I will also try to follow up this email with some notes about problems I have seen in the past, along with possible solutions.

The response I got stated that they had just begun, that in several month the draft guidelines would be distributed to international members for review, and that they would ask the committee about patient review.

I immediately followed up with:

Thank you for broaching this idea with the members.

If I might add, I am not making this suggestion because I doubt the knowledge and integrity of the participants. I assume they are the best and the brightest in the field. I'm making the suggestion because I've seen guidelines from CFS groups that many patients don't want to share with doctors.

Patients are actually in a unique position for evaluating guidelines for doctors. We are the ones who have direct experience with how our local doctors apply guidelines from experts. We are the ones who see which points need to be stressed more and which parts of the puzzle are missing. We are also the ones who suffer the consequences when guidelines are not adequately vetted, and this is why I'm trying to make us part of the process on this project.

Since then I've heard nothing.

 

[Nielk]

I just heard back from Kenneth Friedman of IACFS/ME about the Primer for the Physicians.
He wrote that they are "wordsmithing"? the final section and it should be completed sometime in March.

 

[Andrew]

In other words, patient vetting will not be part of the process.

 

[Nielk]

In other words, patient vetting will not be part of the process.

I'm not sure. Should I ask him?

 

[Andrew]

I'm not sure. Should I ask him?

Sounds like a good idea. See if you get an answer.