From Here ... To Where?

I write this with a growing sense of dejection, with a vastly reduced sense of hope and with an anger I cannot deny.

Those are all my personal feelings and I take complete ownership of them. They are not positive or healthy but they exist.

However, I write this entry on behalf of others rather than myself.

The Whittemore Peterson Institute existed as a beacon of hope for those with an illness where hope and progress had been in short supply. Whether it was foolish to invest such hope in an institution is an argument for another time perhaps. The point is, the WPI represented something tantalisingly appealing for those of us who felt we were not being taken seriously by the medical community.

The events of the past week or so have been extensively documented elsewhere so I will not cover that ground again in this post. What I will say is that I have observed a complete lack of compassion or engagement from the WPI towards a patient community who are desperately sick and who have probably sacrificed much in terms of personal donations and the work required to advocate on the WPI's behalf.

As the week unfolded, I tried to centre myself and put the emotion to one side. This was not easy but I managed to keep quiet about what I was observing.

Other than the sense that the WPI did not value its supporters, I was struck by the reality that they were abysmally lacking in any sort of public relations or customer service expertise. The communications coming from them were either sporadic, irrelevant or downright unprofessional.

Today, Annette Whittemore was supposedly holding a Question & Answer session via Facebook that would also address the questions/concerns that had been emailed to them (I had emailed questions in advance of this Q & A session being announced). What followed was something I can only class as a debacle from start to finish.

Pertinent questions from people who were making their health worse by taking the time and effort to be on Facebook and type out their concerns were ignored. No planning had taken place on how to structure answers or group questions into categories. In fact, it was a poorly thought out exercise that only served to make the Institute look even more inept and insular.

Instead of questions being answered, we were continually threatened with posts being removed if they contravened the Institute's 'social media policy' (whatever that might be) and were treated to the WPI's office manager telling us they were hurt by some of the comments. Forgive my lack of a bleeding heart for your hurt feelings Kellen - I place much more importance on the feelings, and poor health, of those who are now left with unanswered questions and a lack of hope for the future.

The upshot seems to be that the Vivint funds and personal donations were made to the WPI and will remain with the WPI. I am no lawyer so I cannot comment on how that stands up legally.

What seems an altogether different prospect for potential legal action is the VipDx testing that many patients paid a considerable sum of money to have. Annette Whittemore stated more than once that the results of the test had been 'clinically validated'. In light of recent events, I feel quite sure a lawyer could have a field day with this.

In the interests of full disclosure, I am a patient who has donated sums of money to the WPI and I have also invested significant amounts of my rather limited energy to support them via advocacy and voting contests. I am therefore feeling some personal antagonism in relation to this whole mess.

However, my anger is mainly on behalf of those who are much more sick than I am. Those who do not have any quality of life. Those who are too sick to talk or sit up in bed. I suspect a large proportion of those who paid for tests fall into that category as such patients will want to grasp any glimmer of hope for improved health.

A divorce is usually messy and we are often forced to take sides. I am not in possession of all the facts and cannot really comment on who is to blame for us being where we are now. What I can comment on though is how I feel in my gut.

My gut tells me that Dr Mikovits has a passionate concern for the future of ALL patients with M.E. - my gut tells me the WPI do not hold the same passion or ethos. I am deliberately putting the emphasis on ALL - I am sure I do not need to spell that out further. I do not feel valued, respected or important to the organisation I donated towards and advocated for. I therefore cannot justify supporting them in the future, regardless of any promises they make about treatment options.

None of which brings me any further forward in answering the question posed in the title of this entry - From Here ... To Where?