Dear all,
I'm sending this blind copy to all involved to protect your identity and to prevent myself from having to email everyone in person. (Possibly you have received a forwarded version).
Over the past few days we have received numerous inquiries from CFS / FM patients, probably because of this:
The word is out. Prof. Kenny DeMeirleir is running a trial with 10 people on GcMAF (posted on Cort's Forum). In addition 2 other people from your community we currently know of are trying GcMAF, one of them XMRV positive, the other one pending results of the XMRV test. Using GcMAF is not a miracle cure, eventhough it may be presented like one on the internet or by certain physicians. Patients (incl. cancer and hiv patients) who are currently using our GcMAF report varying experiences. Some struggle greatly with the effects of their suddenly reactvated immune function as their bodies are fighting off cancer or viruses now. There is data coming from a research project involving genetic issues that might tell us for whom exactly GcMAF will be a solution and who might need some additional treatment in order for GcMAF to work for them. In addition, we need to wait and see what the current GcMAF patients' experience will be before we distribute to people outside our area.
We fully understand that many of you have been suffering from these illnesses for decades and the kind of opposition, disbelief and insult you have received from the medical community and most likely from your family and friends as well. Many have injustly lost so much of their quality of life, some are left completely bedridden without help, some have died and some have committed suicide because they simply could not go on living with these illnesses without hope of ever finding out what is wrong with them, let alone hope of finding a cure. I hope by mentioning this you realise that we are aware of the devastating effects of your illnesses, and we are sorry, deeply sorry. If GcMAF really is of value for CFS / FM patients, we will do everything in our power to make it widely available to patients.
GcMAF is not a vitamin supplement, it is a very powerful immune stimulator. The effects can be immense. We know that many of you don't 'just' suffer from CFS and/or FM, but many also have undiagnosed 'mainstream' immune disorders and other conditions because of the lack of attention you have received from the medical community. GcMAF can be dangerous in auto immune patients. GcMAF cannot be used with some other protocols and also not with some medications. Because every patient is very different we cannot make general recommendations and will only discuss these topics with those who have been accepted in our trial and will start GcMAF soon.
Our organization can ONLY help people in The Netherlands, Belgium and the UK at the moment. We are looking for ways to increase production and for ways to ship to other countries and continents, but we have not found a secure way to get it through customs yet. GcMAF is a product containing human and animal DNA, there are extensive restrictions for shipping those type of products in some countries.
Please be aware that we are not a medical organization. This is a patient initiative to make GcMAF available to larger groups of patients, because after 17 years of running small clinical trials, the original researcher still refuses to do so. If and when a patient decides to use GcMAF it will be at their own risk and cost. Our GcMAF is safe and the macrophage activty has been tested. It is a functioning product. To monitor the exact effects of GcMAF, we are currently running our own small trials to gain some more experience, but the plan is to make it available for the public at an affordable price. Officially there are no doctors involved in this project. If and when we would be able to send someone GcMAF, they would have to work together with their current physician or a nurse to administer the (first) injection and to monitor your progress.
I am sure you have online friends in The Netherlands, Belgium or The UK. They may contact us so we can run one more trial with patients in our area who we can monitor closely. We will require extensive medical reports supporting any (sub)diagnosis these patients have in the form of a PDF of the original test results/physicians' reports etc, and a list of other symptoms they might have, and a list of current medications and supplements etc before placing them on the waiting list. It is estimated we can start the third trial within 2 months, but we will help patients based on the date of application (first in first send) because we cannot differentiate between one sufferer and another. So, the sooner we have the patient info the better.
If you are receiving this message and do not live within our 'trial area' basically the same applies. Apart from the fact that we first want to run a more extensive trial in our area, the only added criteria will be the question wether we can ship to where you live or not. But perhaps your international patient network can assist with that. Please do not offer to travel to our area to speed up the process, patients in our area actually have to be permanent residents.
A condition from us will be that we will receive medical updates regarding your illness. That means having to re-do the XMRV test after treatment. That means having to re-do all tests (if relevant) that showed abnormalities in the past. And we will ask patients to make a public statement if and when GcMAF has contributed to restoring their health. Without this information we cannot substantiate GcMAF cures anything. If we cannot prove that, we cannot continue our project, which would endanger the physical distribution of GcMAF to yourself and other patients in the future.
Kind regards,
The GcMAF.info team
