Dr Bell is reasonable and objective
Hi all
This is my first posting on this board, so i will take a second to tell something about myself. I know there's a special section for this but i want to reply to this thread, so i hope you don't mind ;-)
I'm Swiss (that's in Europe, haha), now 30 and have been diagnosed with CFS since long enough.. even though it took some time to get that diagnosis, i guess most of us have gone through this.
It was really exciting to hear about the findings of the WPI. This was the first time that i heard or read something that really looked like there might be something to it. So i'm now checking for news about the XMRV research dailiy. Before that i didn't spend much time reading about CFS or even seeing doctors in recent years, because the doctors could not do anything anyway and i was more comfortable just going on about my life, studying (from home) or doing whatever i like and am able to do. Luckily i have managed (or it happened just by itself) to get well to a point where i feel good most days, so as long as i don't push myself, i feel practically no symptoms at all. But the price is that i don't do much physical activities at all.
Like all here, i hope very much that the WPI team is right. They would be real heroes then.
Dr. Bell's letter is very interesting. I don't know him but i'm thankful for every MD or researcher that does something in the field of CFS (as long as he's serious).
But there's something i have a slight problem with. Please don't personally attack me for this, i think it's very important that each of us can state their opinion as long as it's done respectfully and people stick to the facts. Often i read people saying that there seems to be almost deliberate misinformation on CFS, hiding of facts, mistreatment etc.
I agree that there are many doctors who deal with CFS patients in an unacceptable way, harming them with wrong treatments etc. I have seen this too, but luckiliy i have always said "no" to this. But honestly, i can't believe that there are docotors or researchers who would try to "bury" XMRV or another explanation for CFS, when there's really truth to it. First of all, i believe most of them are good, normal people who do their best but CFS is so far more or less of a black box (there is no proven cause yet), so they make mistakes in treating it.
What would they be to gain if they can hide the real cause? Even if some were criminal enough to do that.
The truth will come to light anyway, sooner or later (i hope very much it won't be long now), so all that would happen to them is that they would make fools of themselves, ruin their carreers and maybe even end up in court.
Even Wessely. I 100% disagree with him but i don't think he's trying to do harm. Of course it's a huge problem if you live in the UK and can't get serious treatment because of his work, i can understand that. And if it turns out that XMRV is the cause of CFS i do hope that those people will be held responsible. That's what courts are for and you can't play with the lives of people.
But still i think we should not look for any sort of conspiracy or even believe in one. It makes people with CFS look paranoid. And noone would gain from such a conspiracy, certainly not governments, for example (often i hear people criticize government institutions). CFS creates huge costs. If those people could return to work it would be an immense benefit for their countries. So governmets would be the first to want to find a cure (ok, second, we and our families and friends are first). Also i don't see what insurance companies get to benefit from sick people. They want you to pay and not have to pay out to you, so they want you to be healthy.
I think we should not go in that direction too far and also don't see ourselves as victims too much. Yes, we have CFS and there is WAY too little funding and there were WAY too little efforts in research but i doubt anyone has bad intentions. They just don't know better and sometimes don't care. Which is bad enough. But we need to try to stay reasonable and objective.
So, having said that, i wish best of luck to all. I can't wait for further resarch results and i'm glad to see how active the WPI people are (Dr. Mikovits travelling to Spain and the Czech Republic etc.). Even though there are negative studies, this looks not like something dead at all. The WPI people seem to be 100% confident. Let's hope they're right but i'm careful not to say "this is it" until we really know, the disappointment would be too big. But i will donate too.
Take care
Eric
Welcome to the PR forum.
I suggest you read the book "Osler's Web" by Hillary Johnson. At 30 years of age, you were either just a baby or not yet born when the events Dr Bell talks about took place. I have had this illness for 28 years...28 years of pain, disablility, increasing poverty, disdain, humiliation, abandonment by my government, my family (because they believed the disinformation from the government), my friends (same reason), spouses and lovers (same reason), doctors (same reason).
At this point in time, my government spends more on erectile dysfunction research than on CFS.
Diseases getting more $$ than CFS: (Scheduled to receive $5 million next year. $5 million is what the Whittemore family spent to start the WPI.)
AGING (Is that a disease? We who have CFS die about 15 yrs. earlier than normal): $3172 million
ARTHRITIS: $259 million
AUTOIMMUNE DISEASE: $923 million
(since CFS is thought by many to be all or partly involved in the immune system, why isn't some of this money going to CFS research?)
BATTEN DISEASE: $6 million (why is this getting 20% more than CFS?)
COOLEY'S ANEMIA: $22 million
CYSTIC FIBROSIS: $90 million
DYSTONIA: $ 17 million
FIBROMYALGIA: $12 million
FRAGILE X SYNDROME: $ 29 million
HEALTH DISPARITIES: $ 2970 million
HIV/AIDS: $ 3184 million
HOMELESSNESS: $17 million
(Many CFS sufferers have become homeless)
INFERTILITY: $ 82 million
(Many CFS sufferers have had to avoid having children)
LUPUS: $ 121 million
LYME: $ 26 million
MALARIA: $116 million (1,300 cases in the US, per CDC !!!) (At least a million CFS sufferers, up to 10 million by the Reeves definition, in the US alone!!! Millions more worldwide...)
The only diseases/illnesses that receive less research money are hay fever, Pick's Disease, and vulvodynia!!
What is reasonable and objective about this?
Reeves, the American doctor responsible for CFS research recently came out with a "study" that claims the reason people have CFS is because of childhood sexual abuse and bad mothering!!!!! He got his friends at a nearby University to do this study, costing millions of dollars, and done very, very badly. What is reasonable and objective about this?
In the past, he was involved with a group of his fellows who diverted the only research money Congress ever appropriated for CFS research. They spent it on other diseases (measles and polio, which already had millions), lab equipment for other labs, and 1 million simply could not be accounted for. If just about anyone else stole money from the government or diverted it to other uses, they would lose their jobs, go to jail and have to pay it back. None of this happened!! They were made to go to a class in "better accounting".
What is reasonable and objective about that?
Wessely and cohort have said that awarding support money to people with CFS/ME should not be done because it only encourages them to remain disabled. They also say that such patients should not have tests for their biological symptoms because it only encourages them to think of themselves as having a bona fide illness, instead of forcing them to realize they are only mentally ill with "false illness beliefs". They have set up government clinics for CFS where the only "treatments" allowed or offered are exercise and talk therapy. Those who refuse to go, or cannot get out of bed to go, such as Sophia Mirza, can be "sectioned" or taken by force to mental hospitals and subjected to detrimental drugs and/or procedures. Sophia Mirza DIED after they did this to her. (They had the police break into her home and help take her away because she was too sick to exercise!) The autopsy showed that she had a massive infection of her spine and the nerves near it. In essence, the government health care system in UK killed Sophia Mirza. Many patients with CFS/ME are in hiding from the government system because of their maltreatment and, thus, can seek no health care for anything. In the last week, Dr Sarah Myhill, a UK doctor who specializes in CFS/ME has had her license to practice medicine taken away from her for not following the government's ineffectual "treatment" party line.
I suggest you watch this video on youtube:
http://www.youtube.com/watch?v=7mZMpvtD3rg Read the comments about it and watch some of the other videos about her and her death. Then tell us to be reasonable and objective. She said "NO" to harmful treatment and was forced to endure it anyway. Many of us on this forum feel like that could have been us, or could be us in the future. Even if we are sure that will never happen to us, the fact that it did happen to Sophis Mirza is totally unacceptable on many levels.
The reason that CFS/ME is a "black box" is not because it is too complicated or too impossible to find the cause and a cure or treatment. It is because, as Dr David Bell (a smart, caring, experienced doctor who had been seeing and treating CFS patients for his whole career) says, various aspects of the establishment
do not want to find the cause and a cure/treatment.
Their behaviors prove they do not want to. WHY they don't want to is all that is still in question. As a group of patients who have been deprived of our human rights, our medical rights and our lives, we have every right to speculate on WHY without being characterized as conspircy theorists.
History of all areas of human life do indeed show that sometimes conspiracies are done, so the current fad of characterizing
all who speculate on WHY as paranoid nutters is simply a technique used to shut us up.
We're not shutting up until they do right by us. Please join us in educating ourselves about this illness, its history and all the good research that has been done on it, mostly by private research, since our governments are not engaged in finding the truth.