My email to International Association for CFS/ME

[Andrew]

Below is my emai:

Hello,

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.

Sincerely,

 

[Frank]

again good work Andrew, thankyou

 

[George]

That's awesome Andrew! I didn't even know this was going on. Anything the rest of us should do in support?

 

[leelaplay]

Andrew

You are awesome

 

[CBS]

Andrew,

You might be interested in an earlier thread and exchange with the IACFS/ME (http://forums.aboutmecfs.org/showthread.php?2091-Cohorts-Letter-to-the-IACFS-ME&highlight=IACFS/ME).

I have spoken with a member of the steering committee for the Hemispherix grant and it is hoped that the clinical guideline efforts being funded by Hemispherix will be coordinated with both the research guidelines referred to in the earlier thread (and responded to by Dr. Friedberg) as well as Dr. Vernon's efforts to standardize research methodology (http://aboutmecfs.org/Rsrch/ResearcherYear08.aspx):

We are starting by developing best practices and standard operating procedures using a collaborative wiki space. CFS research network investigators will be in working groups and tasked with developing best practices and procedures and investigators will be in working groups according to their area of expertise. For example, we can have working groups for best practices related to imaging brain metabolism, measuring orthostatic intolerance, standardizing actigraphy, etc. Once working groups derive best practices and procedures, these are vetted through a peer review process and then disseminated to the clinical and research community, as well as the patient community when the information is relevant..

Dr. Vernon is on the board of the IACFS/ME

 

[justinreilly]

IACFSME should just adopt the Canadian Definition and Guidelines. The work has already been done and I don't think anyone can do it better or more authoritatively. Plus, the last thing we need is more definitions. We should consolidate our support behind the Canadian. It could use an update though, so maybe they can use the funding to get together the original authors plus any other luminaries and update the Candian doc.

 

[CBS]

IACFSME should just adopt the Canadian Definition and Guidelines. The work has already been done and I don't think anyone can do it better or more authoritatively. Plus, the last thing we need is more definitions. We should consolidate our support behind the Canadian. It could use an update though, so maybe they can use the funding to get together the original authors plus any other luminaries and update the Candian doc.

It is my impression that the IACFS/ME strongly support the Canadian Criteria as the most complete and useful standard available (see statement by Dr. Friedberg in the thread I referred to above - post #33)

...there is an effort underway to provide standard assessments for the Canadian criteria--a worthwhile effort as these criteria may better capture CFS than other definitions.

And at the same time, a lot has been learned in the last 7 years. Also, as I read the Canadian Criteria, I do not get the impression that it is useful for identifying cohorts with symptoms more or less pronounced in various bodily symptoms or stage of disease and so improvements might be possible concerning treatment recommendations for physicians just beginning to familiarize themselves with CFS.

 

[Hope123]

That was a good idea, Andrew. I should try to write them also in support of what you wrote.

Also:

- I hope Hemispherix support does not influence content of guidelines as this company has not been forthcoming on their data with Ampligen, which makes me very wary of them.

- If they're going to write guidelines (which means reviewing all the relevant CFS literature to date), they should also comment on areas that need more research. This would be in anticipation of the US gov't agency AHRQ's review of CFS and the NIH conference slated for next year. Then they should send these guidelines to AHRQ in hopes that they can influence AHRQ's review and areas of future research needed for CFS.

- Someone needs to research the long-term effects of CFS. Lots of research focused on the beginning of CFS but no one doing stuff on people who have been sick for many years to decades. (aside from Dr. Peterson noting cancer) I think this is a major blindspot and a consequence of not acknowledging that the full recovery rate of CFS is less than 10% for a significant group of people. (The 10% figure is based on mutliple studies.) The few studies lasting more than a 5 years only look at "recovery" - a vague non-standardized concept - no biomarkers taken. People are continuing to live albeit much disabled for years with CFS.

 

[Andrew]

That's awesome Andrew! I didn't even know this was going on. Anything the rest of us should do in support?

Anyone who wants to support this can contact IACFSME. And please remember, they are on our side.

Anyway, I received an email back saying that my suggestion will be given to the committee. I didn't want to just leave it at that, so here's my reply:

"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."
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