Lydia, uneasy is a big underatatement. I am very disturbed that you would get the organization into this terrible conflict of interest and agree to the wrong kind of messages getting out about FM. Is there some way to pull this out of the fire? Karen Sent from my iPhone On 2010-05-24, at 8:01 PM, Lydia Neilson <ag922(a)ncf.ca&gt; wrote:

I do not understand this "terrible conflict of interest" or what the "wrong kind of messages getting out about FM" are. Is the conflict of interest simply that Lilly is part of the website (a sponsor)? As Lydia has pointed out, having a major drug company part of this probably provides resources, many of which are not monetary, that we could not have had without them. Drug company representatives are in doctor's offices frequently. They know how to talk to physicians and what doctors are thinking about ME and FM. They know where the lack of knowledge lies and the attitudes. I think they are a valuable resource far beyond the money. I do not see blatant advertising on the site although I have not clicked on every possible link. The only thing that made me somewhat concerned was their Privacy Policy but what website do you go to that does not collect info on you through cookies. Beyond that you do not have to give any info. At least Lilly is up front and tells us what they are doing. Do you think having Crystaal involved in the development of the Working Case Clinical Definition, Diagnostic and Treatment Protocols, Consensus Documents was a conflict of interest as well? As Lydia pointed out, this would not have been possible without a pharmaceutical company involved. The very fact that 2 pharmaceutical companies have now been involved shows that we are not biased and promoting any one company. I am assuming that if some other company wanted to become involved they would be welcome as well? I have attended Grand Rounds at our hospital. These are information sessions on various health problems giving the newest info on the problem and new treatments. At our hospital at least, these are all paid for by one drug company or another. As I recall, other than a small sign on the lunch buffet table saying "sponsored by..." there is no other advertising and the company's own drug for that problem is not pushed. In fact for most I have attended I could not even tell you what drug company sponsored it. If that is how the ME/CFS info sessions work I have absolutely no concerns. We could not afford to do them without the financial support. I have not read everything on the website but have not seen a "wrong message". If there is something of concern, I would like to know what it is. I assume that if there is some wrong message about FM that the majority agree is a wrong message, (does this apply to CFS as well?) there would be an opportunity to correct the message. I can only imagine the hours of work the network board have put into this on our behalf. I can also only imagine the long discussion/debate (and possibly sleepless nights) on the pros and cons of whether our Network should be involved in this. If this is the decision that was made by the board I fully respect their decision. From what I have seen so far I support the National ME/FM Action Network's involvement in this project and thank Lydia and others for their involvement in the project on our behalf. By the way, I am not on the Network board, am not a doctor, and do not work for a drug company. I had to quit work about 2 years ago due to being disabled by ME and FM. Paul Wagler ----- Original Message ----- From: "Karen Waisglass" <k.waisglass(a)rogers.com&gt; To: "Lydia Neilson" <ag922(a)ncf.ca&gt; Cc: <nmefman-contacts(a)lists.ncf.ca&gt; Sent: Thursday, May 27, 2010 8:51 PM Subject: Re: [Nmefman] ANNOUNCEMENT - FIBROMYALGIA: RECONNECTING TO WHATMATTERS. LOOKING AT THE BIG PICTURE

I have been asked to explain to everyone why I think the National ME/FM Action Network has conflicting interests with the drug company sponsoring the web site and information campaign. I respect the decision of the volunteer board even though I don't agree with it. My comments are about the organization’s conflict and not any conflicts of the individual volunteers who are people of integrity. My comments are about the policy issues, and are intended for healthy debate about the issues. These are very important matters for any future donations and initiatives. In fact, the issues are important in the larger context of national health care policy. In Canada, Direct To Consumer Advertising of Prescription Drugs (DTCA) is not legal under the Food and Drug Act. The drug companies work around the law with indirect marketing campaigns that are supposed to be “educational”, to patients, doctors and the general public. There have been many proposals to strengthen the provisions of the Food and Drug Act, most notably in Health Council of Canada’s Report on Direct to Consumer Advertising of Prescription Drugs in Canada: (http://www.healthcouncilcanada.ca/docs/papers/2006/hcc_dtc-advertising_20...). The report reviewed studies indicating that drug company educational programs misinform rather than provide balanced information allowing for informed decisions, and that they drive up medical costs. Yes, drug companies are very experienced at providing information. That does not mean the information is always fulsome and balanced. As noted on the web page Marketing Overdose (http://marketingoverdose.org/documents/campaign_briefing.pdf), funding patient advocacy groups is one DTCA method used by the drug companies. When patient advocacy groups accept money from drug companies, there is a danger that the drug companies are subtly marketing their products to the group’s members and there are concerns about the influence the funding may have on the advocacy work that the group does. Criticism and or questioning of major donors is difficult. Advocacy groups are in the business of advocating. Their members and the people on whose behalf they advocate are vulnerable marketing targets. Drug companies are in the business of selling drugs. These are conflicting interests. The positive message of the web page (“getting back to what matters”) seems benign but there are hidden dangers with implied messages: 1) managing Fibro pain will manage Fibro in general, 2) doctors know the cause of Fibro and know what to do about it, all you need to do is tell them your symptoms and they will diagnose the problem and help you, 3) the sponsoring drug company has medication available that will get Fibromyalgia patients back to their activities. These messages can leave patients vulnerable to criticisms from insurance companies, employers, families and friends etc. that they should be back at work and other activities. Perhaps the web page could be adjusted to deal with the implied messages. Since writing my initial email, I have seen an ad in a local community newspaper about one of the info. sessions indicating the speaker will be the head of a pain clinic here in Toronto, known for its multi-disciplinary approach (a noted neurologist) so it's good to know the session is not likely to be dominated by the drug companies pushing drugs. This is encouraging. As another writer notes, donations from multiple drug companies rather than just one means less influence from one. If the organization is accepting such funding, then it may help to be mindful and watchful of the conflicting interests so that they can be managed to the extent possible while in the relationship. Karen -----Original Message----- From: jmld(a)nb.sympatico.ca [mailto:jmld@nb.sympatico.ca] Sent: May-29-10 4:05 PM To: Karen Waisglass; Lydia Neilson Cc: nmefman-contacts(a)lists.ncf.ca Subject: Re: [Nmefman] ANNOUNCEMENT - FIBROMYALGIA: RECONNECTING TO WHAT MATTERS. LOOKING AT THE BIG PICTURE Karen, Please explain yourself to the organization, why would you have such a disturbance and consider there is a conflict of interest and the wrong messages are getting out about FM.? Nobody has been more involved with the public awareness campaign about fibromyalgia than I have. I have personally hosted two public awareness concerts, had my name dropped in the House of Commons by an MP for being responsible for his knowledge regarding this debilitating illness through a radio station in Newfoundland and Labrador, worked tirelessly for the past twenty years raising public awareness and told by my gp that I was the most knowledgable person he could think of regarding Fibromyalgia. With the help of FM Canada, I toured the province of PEI and last two years toured the atlantic provinces trying to raise public awareness. . If the pharmaceuticl companies can spare some of their wealth to raise public awareness and educate people and health care workers about this debilitating illness then my blessings to them. Nobody gets forced to take their medications. I take none myself, so with the right educational programs, etc, etc, I believe it will be a a win win situation for everyone. We are getting very tired and not getting far with our effforts..we need help... ---- Karen Waisglass <k.waisglass(a)rogers.com&gt; wrote: