The IACFS/ME — From Strategic Jitterbugging To Jumping Into A Mosh Pit

The IACFS/ME — From Strategic Jitterbugging To Jumping Into A Mosh Pit

By John Herd
June 3, 2012

The International Association of CFS/ME (IACFS/ME) has struggled to economically survive almost since its inception.

Given their limited economic resources and a seemingly gradual diminishing attendance at their conferences [which translates to income] they’ve needed to do everything they could economically to just get by.

Over the years IACFS/ME Internal politics has triggered considerable turmoil within the organization, which has no doubt also reduced their effectiveness and weakened the organization.

When the organization was originally formed its membership was limited to medical professionals. The choice immediately engendered strong negative sentiments amongst many in the patient/advocacy community. Despite this, the organization’s early conferences in New York, Florida and California were well attended by patients. Getting local doctors to attend was another story; few ever did so the conferences were for all intensive purposes preaching to the choir.

To be fair to some of the past organizational presidents, vice presidents and executive board members, the organization’s weaknesses have not been entirely their fault; as with many organizations there were always more talkers than doers within the IACFS/ME. It’s tough for a few people to effectively run an organization, particularly when they have their own careers, families…

Despite this some of the executive board members hung in for a long time, possibly not because they particularly wanted to but because there were not others willing to pick up the baton. And there was certainly politics involved in this too.

I remember one case of the board being very dramatically divided on who should be the next president. Some members threatened to quit the organization if a proposed person became the next president. That person stepped aside and a new president was chosen the next day. In another case the presidency may have been more a case of anyone who would take on the role.

Aside from some random statements from its various presidents and a very limited number of other cases, the organization has refrained from taking a hand in proactive political advocacy. Given that a strong voiced stance on many matters from the organization would have been helpful, their frequent silence has also not engendered it well with the patient/advocacy sector.

Towards the goal of sustainability, the IACFS/ME has considered many strategies to make itself more applicable to a broader population, thereby potentially increasing its revenues and support. These efforts have not been a strategic waltz but more like an impetuous jitterbug.

One of these steps was to change its name from the American Association of CFS to the International Association of CFS. Then it decided to include fibromyalgia under its umbrella. Another, and I won’t get into the pros or cons of the choice, was to change its name from the IACFS to the IACFS/ME. Now we see it entering into a contractual agreement to produce a “Fatigue” journal.

This last act may lead to the IACFS/ME becoming more relevant to a broader population and medical sector, namely ranging from many illnesses to people who have not gotten a needed java fix. The choice to do this may also have something to do with the organization being lead by a PhD psychologist.

Whatever the reasoning and motivations for this action may have been one thing is clear, it will surely erode a lot of support from the CFS/ME community.

Given this new direction for the IACFS/ME I would propose that the organization drop the names CFS and ME from its name and become the “International Association of Fatigue.”

Oh, and java junkies of the world unite, we’ll have an organization looking out for us. Who knows, maybe even Starbucks might even throw the organization some money.

John Herd, 2012
May be reposted with prior permission
Feel free to respond to me via:


About johnherd

A free thinker
This entry was posted in Uncategorized. Bookmark the permalink.