I am STILL reading my way through Osler’s Web and it’s still very good and worth the effort of me reading it. I am in awe of Hillary Johnson for the sheer care, time and work that she put into this ten year overview of the crisis in care and treatment for people with ME misnamed Chronic Fatigue Syndrome.
One of the threads throughout the book is the story of the Amligen trials. It’s a story that is still going on today. Patient’s from the severe end of CFS were chosen to do the trial and all patients have to stop taking any other medication they were on for the duration of the trial. Half were given Amligen via IV and half received saline. Remember these patients were so ill they either used a wheelchair, were more or less housebound or were unable to get out of bed most days.
As the trial went on those on saline became much sicker and 4 patients, unable to cope any longer committed suicide. I cannot begin to describe what it’s like to be that ill – and for them to be trying to survive with no meds, is unbelievably difficult.
Meanwhile those on Ampligen were improving all the time and the side effects had proved marginal in all but one case, and even she requested to continue the trial because she was getting better.
It was going so well that the drug company and researchers thought they could end it early and go to the FDA with what they had, as it was already showing better results than drugs that had so quickly been approved for HIV and AIDS patients. So the drug was stopped.
And those who had been so much better, out and about, cognitively functioning and no longer needing their wheelchairs, relapsed within three months.
The drug was not approved.
The fight goes on as more and more people lose everything to this illness and more and more people die of it. The myths are still circulated, but thankfully are answered by those who have spent the time finding out the truth about this.
More recently Rituximab is also going through trials and showing some promise. Let’s hope and pray that even if those of us ill now will never see treatment let along a cure, at least the next generation can hope for a better deal.