Plea from Dr Bell to donate to the WPI

[VillageLife]

Please donate to WPI, Visit......
http://www.wpinstitute.org/help/help_donation.html

 

[fred]

There is already a sticky on this. See link below.

http://www.forums.aboutmecfs.org/showthread.php?4715-Plea-from-Dr-Bell-to-donate-to-the-WPI

 

[VillageLife]

ooops sorry!

 

[oerganix]

Dr Myhill has had conditions placed on her but has not had her licence withdrawn. The GMC has 18 months in which to bring her to a Fitness to Practice panel which may then withdraw her licence. In practice, the conditions are so unworkable that she will be hard pressed to continue treating patients (e.g. she is not allowed to prescribe certain medicines). All this aside, your point is exactly right: Dr Myhill is being persecuted for not following the UK Government's NICE guidelines, not only for ME, but for other conditions. There is a separate thread on this issue if people wish to learn more.

Yes, you are right, technically they have not taken her license. But in a practical sense, they have. She cannot prescribe any "prescription only" medicines and must take down several pages of her website. Basically, they said she isn't a "good" doctor because she belongs to a group of doctors who practice Environmental and Nutritional medicine, not the conventional surgery and drugs kind. One of the big objections to her website was that she advocated abstaining from childhood vaccinations that might cause autism. I have to wonder if the vaccine industry is behind this, at least in part. Remember the hatchet job done on Dr Wakefield, the only criticism that stuck being that his research was funded by parents of autistic children, which was, incredibly, called a "conflict of interest".

The first issue claimed that she is a danger to public health and safety because a group of conventional doctors claimed that she advocated that a patient give himself vitamin B12 shots, a practice done in UK and US by many. She says that she only recommended this to this patient's GP, that it was never done, and they retorted that they don't have to prove this allegation at this time because it wasn't a hearing requiring proof! They also took this patient's medical records without permission and without anonymizing them and publicly identified his mother as a CFS sufferer as well, two breaches of patient confidentiality.

Under their "danger to public health and safety" rules, it seems to me that Wesselly and crew could be charged with the same offense. Wouldn't it be interesting to see a flood of such complaints about them? I guess their defense would be that they follow the NICE guidelines, which they wrote!

 

[Bob]

great message hidlyn... thanku... it's great that you are getting involved in the forum.

I enjoy reading the forum posts, but have not posted myself until recently. My name is Heidi Bauer and I help support the WPI in whatever way I can. I would just like to thank all who have donated. It dawned on me a little while ago that we are donating to help each other as much as ourselves and WPI. So, as a patient who may be helped by current and future research at WPI, I thank you from the bottom of my heart. The CFS/ME community is amazing in their generosity at this time. Again, I'm very grateful to you all and have sent in donations several times myself for friend's birthdays, Annette's birthday and just because I can't stand to see the government win out again. I hope we can keep the momentum going.

http://www.facebook.com/group.php?gid=119741014712459

 

[Bob]

If new members want to introduce themselves, then I welcome that... a big welcome to everyone... let's not put people off from joining in with the group just because of a thread title.

Let us all respond only to the title of the thread, "Plea from Dr. Bell to donate to the WPI". This is not the the place for "new" member intro's or education.

 

[leelaplay]

I help support the WPI in whatever way I can. I would just like to thank all who have donated. It dawned on me a little while ago that we are donating to help each other as much as ourselves and WPI. So, as a patient who may be helped by current and future research at WPI, I thank you from the bottom of my heart.

What a lovely thought hidlyn - thanks for that and welcome to the forum.

I hadn't known that WPI had a Friend donation category of only $60 (which could be $5/month)! I want one of those pins.

from the WPI site:
Friends of the Institute
For a donation of as little as $60.00 per year, you can become a "Friend of the Institute." You will receive a beautiful WPI Butterfly logo pin, invitations to WPI events, our newsletter and special email updates.

Click here to find out how you can make a donation.

 

[Orla]

What if every member of Phoenix Rising could give $1 for every year that they've been sick? How many years of our lives have all of us collectively given to CFS?

If ten million people are sick, how many years, how many lifetimes have been taken?

Hi Lily, I took your suggestion and donated $12. (I also have a small monthly standing order for the research account of our Irish group. I find the Standing Order an easy way of giving a small amount regularly).

Rebecca1995 thanks for this.

You can indeed have your credit card charged automatically every month through XMRV Global Action at this URL: http://www.causes.com/causes/421525

You can do one off donations there also.

This is the paypal one if people prefer it:

https://www.wpinstitute.org/help/help_donation.html

 

[Gerwyn]

The people we thought would help us have not and will not. We have to help ourselves!!! DONATE TO WPI !!!

I agree entirely the CAA should be ashamed of themselves>ourbest opportunity for 25 years and they are faffing about with computer programmes and pain seminars

 

[Gerwyn]

Well, whether it was something I wrote or actual evidence that persuaded you, thank you for having an open mind and donating to WPI which is really going above and beyond to help us.

I agree with you entirely Justinreilly.The CAA has clearly deserted the community they purport to advocate for.It is time the community deserted them and supported our true advocative body the WPI.We need Webinairs like a hole in the head.We need action and funding for the WPI now. There is also published evidence showing a mitochondrial biomarker.It would take about 200 patients to make it generalisable.Mcleary's salary would easily cover the costs of the study.They could even follow the instructions which would make a nice change

I am setting up a direct debit as I type

 

[Bob]

I am setting up a direct debit as I type

Wow... multi-tasking!?! Good luck with your multi-tasking Gerwyn! Hope it goes to plan! :Retro wink:

 

[bel canto]

Ha! Good one, Bob!

 

[eric_s]

Thanks to all who replied to my posting. Please be aware that english is not my native language, so i might not always get my point across exactly as i wish to.

I realize i hijacked the thread a little bit, so i will respond in this one posting and if someone minds, just tell me. After this i will move to another thread.

Thanks Jerry S (another S ;-) ). Best wishes to you too. I have never posted on another CFS forum. But i really appreciate the XMRV Buzz page here and it's great that there seems to be a connection between some people organising PR and the WPI. It's the best one i know.

Follow the money. Money that was supposed to go to research ME/CFS went to other projects. The psychs are getting tons of money treating us like we are nuts. I may be paranoid, but you know what, that doesn't mean they aren't out to get me. I've had this 25 1/5 years and have seen all the politics, and trust me, someone is benefiting from not taking us seriously.
So anyway, gave $50 last month and $15 right now, and that really hurts because I have no job, my husband gives me no money, and I'm deeply in debt. But I don't want to see WPI go under.

I totally agree that it's a big shame that there was so far not enough money and manpower in CFS resarch. But if the XMRV connection turns out to be true, then this will change big time, i'm sure.
I also agree that each "direction" in medicine is trying to find the truth about CFS and thus is in some way competing with the other directions. I mean psychiatrists (i almost have to throw up even typing this word, believe me, even though i don't mind them as longs as they stick to the people who really need them), neurologists, internists etc. each doing research and also treatment in their area and of course trying to convince the source of their funding (politicians, as long as they're working for a public institution, like most universities in my country are) to provide them with funds. But i believe that the reason why they are doing this is not malicious, i believe it's natural in some way, because they can only search in the area they understand. As soon as there is solid evidence about where the cause for CFS lies, the ones who work in other, now "wrong" areas of medicine will drop out of the race, i think.
But of course in the USA it might be different, i think your health system is much more privately organised. There might of course be doctors who don't care if they're right or not, all they want is patients. Over here, it's not like this.
But everywhere, in general, i believe, doctors are just like you and me. The big majority are decent people and believe in what they are doing, at least that's what i believe and what my experience tells me.
And with politicians i can't see any way except for corruption how they would benefit from hiding the truth. And if they're corrupt, it means they're set up to be taken down (i mean in the legal way). But sure, most politicians have to try very hard to cut costs, so they have to be persuaded to invest extra money. No doubt about this. This is the big challenge.

I have said "no" too. But a child or a vulnerable person is not in a position to say "no". Also saying "no" means you don't get any treatment, which if you are asymptomatic like you may not be a big deal, but for some of us it is a very big deal.

Right. And like i said before, i wish every doctor who deliberately or negligently hurts a person by wrong treatment would be held responsible. Of course this is not going to happen. About the second part.. i don't know the UK's health system. In my country (Switzerland) you are free to choose your doctor, if you have the standard health insurance, which is mandatory and for which you have to pay month by month (but it will be subsidised if you can't afford it). So this is no problem here, you will not get treatment by that doctor but by another. I realize i might be different in your country. And like i said, i hope this madness will end soon.

Most chronic diseases have no proven cause. Yet it doesn't stop government and pharma pouring billions into research and treatment.

I don't know about that. I'm no doctor. Some might get a lot, some none or very little. Yes, CFS has recieved much too little resources up to now. And this has to change. That's what motivated me to write my initial posting. I will get back to what i mean later.

I think the truth will come out eventually, but only with great effort on our parts. It won't just drop from the sky. Why are patients who have no money, are in debt, and in severe financial difficulty having to fund the WPI for example?

I don't know. But i do know that it should not be this way. And in case of most illnesses it's not that way round. That's what's weird about the CFS situation (among other things). But if the XMRV hypothesis is correct, then i'm pretty sure, that from now on the truth will drop from the sky, no matter what anyone does. The hypothesis is out there. The scientific community is aware of it. Many studies are underway. If it is true, there is no way to stop it, if you ask me. Ok, a nuclear war maybe.. bad joke, sorry.
But please don't get me wrong, i don't want to send the wrong signal. It's important that people donate to the WPI. I will ask my family members to do so, too and i thank everyone who has donated so far. Even if the WPI would not need the money i would want to donate, because they really deserve it unless they were frauds or bad quality scientists, which i don't believe. And don't bash me for saying this, like i said, i don't believe they are, but you always have to consider every possibility unless you have some solid facts. But if you're in serious financial trouble i would advise you not to donate more than you can really afford. Better try to find other people who donate then. The WPI will get it's money, the way things are now, i believe the world wants to know about what XMRV does and thus the money will flow. So unless the WPI comes out and says that they will have to stop work without donations i think people should donate but not as much that you will not have enough to care for yourself.

I hope so too, but if it happens it will take a very long time. The Thalidomide victims took decades (40 years?) to be properly compensated. Haemophiliacs infected with HIV/Hep C in the '80s still haven't been properly compensated. Many of them are dead now so won't be claiming compensation. Personally I doubt we will ever receive a penny of compensation.

Unfortunately that might be true but to be honest at least i for myself think i won't give a * if i'm well again. I will have better things to do. But i was lucky enough to be able to avoid the worst traps. I also don't care about financial compensation too much, what i would like to see, is that all the people who were talking, thinking and doing bs will have to face the truth. But let's not rush that, we are not there yet, if more positive studies from trustworthy sources come out, then it will be time for me to think about that. I don't want to cheer in vain now.

And actually you can play with people's lives and get away with it. Look at Bush & Blair and what they did in Iraq. Over a million innocent people dead and not a war-crimes trial in sight.

Ok, but that's another story. And i don't agree 100% but we would have to discuss this in another place.

Your logic is flawed. In the long-term you are right it would be of benefit to society for people to return to work. But in the short term it may be incredibly costly. Anti-retrovirals are not cheap. Also governments don't always act in the best interests of society (some would say they seldom do). And the bottom line is they are not looking for a cure. They haven't been looking for the last 30 years.

In the very short term, it might cost more. But again, i think most politicians (in the western world), like doctors are honestly trying to do the right thing. Of course, there are very differing views what the right thing is. So if they can be convinced that the current politics on CFS are wrong and that there might be a physical cause that can be found and that then there can be a cure i'm sure they will want this to happen. They are not monsters (in almost all cases). And it's not true that they are not looking for a cure. But unfortunately they have not tried hard enough so far. The NIH and the NCI are public institutions, so is the university where the WPI is located and many other universities involved. They are looking.

Insurance companies benefit from not recognizing illnesses and therefore not paying for sick people because they save money. They are profit making entities, not charities. Their aim is to maximize shareholder value. Indeed legally they are obliged to do this.

Here the health insurance companies are private but don't make profit, i think the law is like this. But of course, it's much different in other countries, i know. But as far as i know most people with CFS do get treatment of some sort now and a lot of it (since it does not help them, so it's basically open end). And insurance has to pay for (most of) it, at least over here. So i don't think they would be worse off. Even if the drugs are expensive, the number of doctor visits by CFS patients would probably drop and all the costs for wrong drugs or treatment could be avoided.

So now to get back to the "conspiracy" issue. What i was trying to say is this. Maybe now the whole thing will be solved. But if it turns out that XMRV is not the cause of CFS, then we are to some degree back in the old situation. So our only chance is good quality research. How do we get that?
We can get it by private corporations. The are not charities as you have said above, so they will only do it if they can profit, if it's a investment that makes sense for them.
Or it can be done in universities. In my country most of them are public and thus it's politicians who allocate the funds.
Either way, we need to convince the decisionmakers to allocate funds to CFS. They will do it, if they feel it benefits them or if they feel it's necessary (in case of politicians). So we will have to get them to know the facts. In order for them and the public (which can put pressure on politicians and help with donations) to listen to us and believe in what we say we need to be CREDIBLE. We are very heterogenous, all ages, both sexes, all classes. So we might have some nutcases among us (and that's ok, they're everywhere). But all in all, WE ARE NOT PSYCHOLOGICALLY ILL, at least i'm convinced i'm not and so are my doctors. Plus i have the necessary reports to prove it. And i think this is true for all people with a correct diagnosis of CFS. So with all the crap theories out there, we need to look like what we are. Good, capable, normal citizens of our countries, who deserve that appropriate efforts are being taken to fight and defeat this illness. And the last thing we should look like is paranoid or anything of that sort. That's why i don't like those tendencies. Even if there was a conspiracy (which of course there is not), as long as we can't prove it it would be best for us to ignore it. What we need to do is show to the public and politicians that there is a very large number of people out there who suffer heavily from an illness that so far is not understood much. And that those people are in many cases unjustly treated by government authorities and courts and that the funding for research for that illness is totally unproportional to it's toll on the individuals who have it and to it's toll on the economies and societies. When they understand that, then something will happen. But we can only get them to understand this if we look serious enough, WHICH WE ARE.

What is "reasonable" given the dire circumstances some people find themselves in with their whole lives ruined? You tell me

I have no idea and of course i can't and don't want to judge other people whose situation i don't know. I think we should just all do our best.


Yes, Robin, i agree. I understand the frustration and like i've said i'm very glad for any doctor who is active in this cause. Many doctors perform very poorly when confronted with a person with CFS, so it's good to have him and others like him. And i like your avatar ;-)

Thanks oerganix. I understand what you say in the first paragraph. That's why we have to stay strong and win this thing. The question is how to get there.
Nothing about those things of which you mentioned that they happen is reasonable and objective. That's why i believe we have to be this way in order to make the facts known and accepted so that things will go a better way. But if we are lucky then the WPI and other teams are doing the necessary work right now.

Alright, smrny. No more postings of that sort by me in this thread.



Bye all. And again, best wishes to everyone.

Eric

 

[Frickly]

Welcome Eric!

 

[Cort]

I agree entirely the CAA should be ashamed of themselves>ourbest opportunity for 25 years and they are faffing about with computer programmes and pain seminars

Darn! Why does this have to show up?The CAA is doing research on mitochondrial problems in the brain, vascular problems, gut problems, HERV's, exercise problems, autonomic nervous dysfunction....and they are devoting the first study from their Biobank to replicating the WPI's XMRV study.

I'm so tired of being the CAA's 'protector'...this happens to be true! Its EXCELLENT research!

Faffing about computer programs.... Why can't you support both organizations research programs? They're both doing fine research - why not just leave it at that?...

They're both doing excellent research - support them both!

 

[Cort]

.It is time the community deserted them and supported our true advocative body the WPI.We need Webinairs like a hole in the head.We need action and funding for the WPI now. There is also published evidence showing a mitochondrial biomarker.It would take about 200 patients to make it generalisable. (deleted scandalous, untrue comment)
I am setting up a direct debit as I type

We need Webinars like a hole in the head? I like the webinars! I think they're informative. I like to learn about the ins and outs of the definition problem. With regards to your mitochondrial biomarkers the CAA has an ongoing study on mitochondrial dysfunction in the brain.

 

[Kati]

We need Webinars like a hole in the head? I like the webinars! I think they're informative. I like to learn about the ins and outs of the definition problem. With regards to your mitochondrial biomarkers the CAA has an ongoing study on mitochondrial dysfunction in the brain.

Webinars to teach us won't change that most doctors know nothing about ME/CFS, most don't read papers about ME/CFS and though it's nice to know, I wonder if it will have the same impact as XMRV. We need education- the right kind to our physicians, we need the WPI to be funded adequately to continue researches that will change our lives.

Respectfully, this is my opinion.

 

[alphahusky]

Eric, my point was that when I got sick iin 1984, and when I started searching for answers, all I got from our government was it didn't exist. Read Hillary Johnson's "Osler's Web." It wasn't doctors making mistakes, studying hard but the wrong things, it was doctors and researchers making fun of us, treating us like we were crazy, and denying us any chance to get better. So I began to ask, "Who benefits?" And I concluded, personally, that our government knew something and they wanted to keep it hidden. Look what's happening now. No big outcry. No huge research. Just a bunch of hasty studies that say, "It doesn't exist," using the wrong people and the wrong process. Why do they want it hidden so much? Why do they want it to go away? Could be money. Could be someone made a mistake. In my case, I was given an experimental vaccine and my immune system started to show abnormalities. A few years later I got Mono (Glandular Fever) and never got better.

If you can explain to me why they have tried to cover up this illness for about 30 years, then I will gladly give up my conspiracy theory. And my paranoia. Okay? And then maybe you will take me seriously.

 

[Cort]

Webinars to teach us won't change that most doctors know nothing about ME/CFS, most don't read papers about ME/CFS and though it's nice to know, I wonder if it will have the same impact as XMRV. We need education- the right kind to our physicians, we need the WPI to be funded adequately to continue researches that will change our lives.

Respectfully, this is my opinion.

I agree that nothing could have the impact that XMRV could have if it works out. I think if it does it will change everything and I think it should be fully supported.

But the CAA started its current research program long before XMRV showed up. After XMRV showed up there are two support groups (outside of the WPI) that I am aware of that are directly financially supporting XMRV studies - the one in the UK and the CAA. THe XMRV replication study with Glaxo Smith Kline is the first new study the CAA has taken on in several years. They are using acute onset patients with PEM and trying to focus on those patients with NK cell abnormalities. Their study is probably the best chance we have for XMRV to show up...... Yet that gets no traction, for some reason, here.

Support both groups or just support the WPI fine - but don't trash a good research effort - we have too little good research going on as it is.

I'm not saying don't support XMRV fully - there's no need, though, to bash a excellent research program while you're doing it.

The reason I bumped into this thread is that it was reported to our Report Thread list because some of the posts were thought to be offensive.

 

[eric_s]

Thanks Frickly And just one more word to alphahusky. I do take you seriously. I just don't share your views on these things. But we should discuss this in another thread and i can't spend a lot of time here in the coming days, because of a family issue. And as with all of us, my capacities are limited, so i try very hard get to the things done, which i absolutely have to get done and do this in a way that will not run me down. And then if i have time and power left, i can come here or do other things.