Letter from the President

The Need for Treatment Guidelines

We have some circular logic that is getting in the way of good clinical care. It goes like this: We need evidence-based guidelines to develop widespread provider education forums. We need data from experts to develop the evidence that would result in evidence-based guidelines. We have too few experts with clinical data sets from which we might derive the evidence. We need to train more experts, to develop the clinical patient data sets… You see where I am going with this.

In the USA, more than 80% of CFS/ME patients have not found a provider expert enough to make a diagnosis, let alone treat their illness. It is a gaping hole in our health care system, and is true across the globe. Our patients are falling into this chasm. The lack of providers with any training in this field guarantees that this will remain the single biggest issue facing our patients. As investigators, it deprives us of our subject population and skews the population we do study to those patients that can overcome the barriers of our health care systems to seek expert care. All in all, this is simply unacceptable.

Still, we can take some lessons from other illnesses. In HIV, before we knew the name or treatment of the pathogen, we had guidelines based on evidence. We knew to treat our immuno-compromised patients with medications that prevented opportunistic infections; we knew that we shouldn't ignore symptoms of serious complications, etc. The early guidelines borrowed much from other related fields, and they were very helpful. As the HIV-specific evidence grew the guidelines would change to reflect the increasing knowledge base.

And that is where we stand with CFS/ME. Diagnostic guidelines already exist in the form of the international research case definition and the Canadian clinical case definition (both have links on this web page). Treatment approaches that borrow heavily from related fields, but are evidence-based are in play. Sometimes this works well, and sometimes studies in CFS/ME prove that something that works in one area may not work as well in our patients (e.g., fludrocortisone for neurally mediated hypotension in CFS, a study performed by the NIH and Johns Hopkins investigators). So we are charged with evaluating the evidence, and also advise on priority areas for additional research.

The IACFS/ME will sponsor the development of treatment guidelines, and will be working with our newest board member, Ken Friedman, and a team of international experts to review the state of our current knowledge. I would invite the membership to be involved in this process. We need to hear from you as we prioritize the needs and develop this knowledge base. Novel approaches to provider education are also welcome. Those with special expertise, volunteer to participate. This may be one of the most important "products" the IACFS/ME can provide for our members and the international community.

Thank you and happy holidays!

Nancy G. Klimas, M.D.
President, International Association for CFS/ME (IACFS/ME)