I recently introduced several new procedures to allow both placebo conditions and control groups in our self-initiated studies at Mendus. They’re not perfect and I’ve never shied away from the likelihood that we’ll never be able to match the tightly controlled conditions of a lab, or satisfy all naysayers. However, there is little doubt in my mind that Mendus can help people, it already has.
Recently I was directed to a conversation/debate that reminded me that others feel differently about the worth of our endeavours. An active member of a ME/CFS website, impressed with our attempt at a placebo condition in the Q10 study, enthusiastically posted about it on their forums. His positivity was quickly, and rather severely, dismissed by a ‘board member’ who erroneously concluded the Q10 study must be a marketing ploy and felt the project was, I quote, “worse than useless”. These are a few of the tidbits this scholarly gentleman had to say about Mendus, the Q10 study and our placebo condition.
“…the project sounds like a promotional gambit.”, “trials like this are not just a waste of time, they produce disinformation”, “we need to throw this sort of thing in the bin”, “The design as it stands looks disingenuous to me - sounding like a proper controlled trial but being worse than useless.”
Along with his mistaken assumption that I must peddle Q10, my critic also felt my attempt at a placebo condition was laughable. I assume he won’t be laughing at the havoc he believes I’m about to wreak on the ME/CFS research world. I can understand his concern that a placebo condition carried out by the participants themselves won’t be as reliable as normal but is calling the project “worse than useless” really the kind of constructive criticism one would expect from a retired scientist? The member who made the original post sounded the most scientific of everyone involved, succinctly pointing out the inadequacies of a prior ‘real’ academic study completed for a mere 5 million pounds (apparently). Compare that to my budget of $2.50 that I needed for a Star Bucks coffee when my internet went down one day. ------------------- Update: several days after writing this a couple new posts to the original forum thread seemed to clarify things for my critic who took some of his less valuable words back. He retains his stance that the project is risky. I left the rest of the blog as it was.
------------------- Surprisingly, my critic thought our Q10 study “sounded like a proper study”, which leads me to think it’s rather his belief that the project was a promotion that was underlying his negativity. He also suggested patient-led trials should be encouraged and that a placebo condition in such a trial would be simple to carry out…. Okay. I’d like to know how many people had even heard of a truly patient-led study before I began Mendus? This gentleman seems to be implying I’ve just jumped on the mythical patient-led-trial bandwagon to make a quick buck.
I would greatly appreciate if prior to trashing our work, which your members may benefit from, you take the time to read what it’s all about. I do not work for a Q10 company. Nor do I work for a D-Ribose company, a Whey protein company or a Dark Chocolate company (other studies we’re running). I am a neuroscientist with a solid publication record who has worked at world leading research centers. I am dedicating my spare time to helping patients, via Mendus. I have not charged anyone a dime and don’t intend to. There is no marketing ploy and no bandwagon. As far as I’m aware I’m the only person running truly patient-based research so I thank you for acknowledging that it is a good idea. Had you taken the time to read about Mendus, prior to casting your judgment, you may have learned that our primary goal is not the same as traditional research. That makes a huge difference.
The primary aim of Mendus is to provide patients with a means of assessing the efficacy of various treatment options. To do that I setup ‘studies’ informed by the scientific literature that interested individuals can complete. They are free to choose ANY PRODUCT THEY WANT. I provide them with a means of assessing the impact of the treatment on symptoms as well as cognition, FOR FREE. I do offer suggestions of products they can use, making it clear it is a suggestion, in an attempt to reduce variability. Our secondary aim is to amass the individual datasets to perform group-level statistics. The high level of variability that will likely be present in our data sets can be aided by statistical procedures such as covariance and if the Mendus catches on, by huge sample sizes rarely acquired in traditional research. Those skeptical of whether individual patients can be trusted to submit their own data reliably should look at the results of our preliminary ME/CFS questionnaire. You would not be able to distinguish our results from those of Prof. Leonard Jason with data from the SolveCFS initiative. They’re identical.
Lastly, I’d like to point out that traditional research does absolutely nothing at the level of an individual. Even the patients involved in the studies are never shown their results. They don’t get their test scores or a printout of how their symptoms changed. Even if several well-controlled clinical trials revealed that Q10 had a significant impact on ME/CFS symptoms that doesn’t mean everyone involved benefitted. Nor does it let an individual looking to try Q10 know whether the supplement will work for them. That is what we do at Mendus and in my humble opinion, it is not “worse than useless”. My guess is the woman who discovered her fatigue and pain might be helped by adding iron to her diet would agree, as would the woman who found D-Ribose to be the best thing she’d come across in years. People are benefitting from Mendus and our group statistics may one day be used to guide ‘real’ research, despite whether some people believe our placebo condition will work or not. By the way, we also have a healthy control group in the Q10 study.
In science one must respect differences of opinion, and I do. While stating one’s opinion should always be encouraged, holding a position of influence comes with certain responsibility. In my opinion, this recent criticism of Mendus was irresponsible and potentially drove patients away from a project that could really help them. All I hear is that there isn’t enough money and research going into this disorder and yet when someone steps up with novel ways to get around the problem, hearing, “throw it in the bin… it’s worse than useless” is discouraging.