Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

by Jody Smith

The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending.

There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about the origins and history of the FDA, as well as about several other severe health conditions including HIV/AIDS, cystic fibrosis and muscular dystrophy. An advocate for CF and another for MD spoke at length about the challenges that faced them in the early days of advocacy in bringing attention, funds and support to those suffering with these diseases.

The webinar was expected to be an hour long, according to the email invitation I received. At an hour and half into the webinar, mentions of ME/CFS had been few and far-between. At this point questions were taken. As I watched the time, I wondered how the waiting callers were doing. They do have ME/CFS after all, and many of us don't hold a brain-battery charge for 90 minutes or more. Would they be able to hold it together to ask their questions?

And if we were the reason for the webinar, why was our participation playing such a small part in the proceedings? I don't know how many callers were waiting, but with such a short time available to them, was everyone able to get a turn, and did they each get the time they needed?

I had recorded the webinar and listened through the two hours of the meeting again the next day. At first listen-through, I'd wondered what the point was in inviting us to listen to the problems and successes of these other groups. Somewhat reluctantly, I concluded after a second run-through that, while most of the content about ME/CFS did not appear until the last half hour, and most of that was found in the question and answer period between the speakers and callers, this webinar may prove to be a valuable resource after all.

I'm not sure what I expected, perhaps that the speakers would address the unique challenges facing those of us with ME/CFS, the invisibility and lack of respect we find in our dealings with the medical, research and drug manufacturing communities. Maybe I thought the speakers would bring us some insights into why we have been shunted aside for decades by the powers that be.

None of this occurred. But the experiences of AIDS, CF and MD advocacy may nevertheless be something we can benefit from as we work towards effective advocacy, research and treatment for ME/CFS.
Sandra L. Kweder: History of the FDA and Drug Regulation


The first speaker was Rear Admiral Sandra L. Kweder, M.D., U.S. Public Health Service, Office of New Drugs, Center for Drug Evaluation & Research, FDA. She began with an overview of the history of the FDA and drug regulation. She went into detail about how the review process for drugs works. She recommended that those of us with ME/CFS and our advocates would do well to connect with institutions that conduct drug trials, and to gain from the experience of other patient groups.

"Objective measures are limited. We don't have a marker in the blood or a marker and a muscle biopsy or something of that sort that has clearly been shown to predict the clinical course of disease. There are some that are subjective, but none are widely accepted or definitive. There is no question that the clinical trials and drug development have been constrained by these vectors," Dr. Kweder said. "Companies are likely to be reluctant to invest in developing a treatment that is surrounded by all of these uncertainties."

"There are other conditions that have had exactly these same challenges and are seeing the fruits of collaborative work between patient advocates and researchers and funders," Dr. Kweder went on to say. "Progress has been made by establishing definition of the clinical trial populations and targeted reliable measures to assess their symptoms and functioning, so I think this to me makes me very optimistic about CFS and ME."

Dr. Kweder's final word of advice was that we should get creative, and that we should learn from the experience of other advocacy groups.
Richard Klein: How to give input to the FDA


The second speaker was Richard Klein from the FDA's Office of Special Health Issues. Klein talked about how patients can give input to the FDA.

"I want to talk a little about advocacy and the role that patients play in advocating FDA and outside FDA," he said. "Traditionally it has been through advisory committee meetings through open public hearings or written submissions. We have had public policy meetings where the public is invited to speak. Public town hall meetings and written comments that are requested to the Federal Registry."

He referred to advocacy by patients with HIV/AIDS back in the '80s. He brought some light as to how the FDA works, detailing what the FDA can and cannot do. They cannot direct drug research for instance, although they can offer guidance in regards to the development of medication.

As he spoke about patient advocacy as carried out for HIV/AIDS in the early days, I was aware that this is one of the areas of real difficulty for people with ME/CFS. Many of our ill are so incapacitated that the idea of showing up in numbers and doing anything other than perhaps rolling off a cot is inconceivable.

And for whatever reason, we just don't seem to have the family members and friends often seen lifting up other health conditions. Walk-a-thons and public outcry in meetings or rallies aren't going to work for us, unless healthy people who care about us start showing up in greater numbers.

Still, it may be worth doing a little brainstorming as to new and varied ways that the bedridden and the housebound might be able to combine their voices in order to be heard. The recent email campaigns by people with ME/CFS to the FDA, to other agencies and organizations, to public figures, for instance, seem to be bearing fruit. We are of course in early days, in terms of being heard and noticed. But it is a start.

He pointed out that we "really need to work with the FDA but also researchers, Congress, which can direct funding and to a certain extent can call the shots on how research is pushed forward in a particular direction." He suggested that we need to give special attention to the pharmaceutical industry.
Mary Dwight: Learning from Cystic Fibrosis


Mary Dwight, the Vice President of Government Affairs with the Cystic Fibrosis Foundation, was the next speaker. She led us down the path taken by cystic fibrosis advocates over the years, from days of invisibility to a substantial measure of success.

Scientific research and information is the ground floor to getting anywhere. The Cystic Fibrosis Foundation ran into resistance among drug developers in much the same way we have with ME/CFS. Drug companies were not eager to develop drugs that offered no cost benefit for medications that would serve only that specific patient community. The foundation overcame this resistance by offering up venture philanthropy.

Venture philanthropy is willing to try new things, providing financial, human and intellectual capital. It may be focused on measurable returns, with progress being evaluated at certain points along the way. Venture philanthropy may involve capacity building rather than targeting program development or costs of general operation.

At one point there was some disagreement between the CFF and the FDA as to the importance of a particular drug for cystic fibrosis. The FDA's stance was that a second drug was not necessary since they had one available on the market. The foundation pointed out that the initial drug sometimes didn't work or stopped working. The FDA listened, and changed their decision about the second drug.

That, my friends, was encouragement for advocates and patients alike.

The Cystic Fibrosis Foundation put together a patient registry and care centers. From there, drug developers and patients could be brought together to perform clinical trials. Dwight said that the "patient registry really enables us to keep data that was gathered in a clinical trial against what we knew about the disease."

The foundation organized a national therapeutic network focused in one location. They created standardized research procedures, and studied design and advice from experts. Communication was stimulated, and collaboration was encouraged by the gathering of scientific consortia. Dwight said that it is up to the patient community to bring data to the FDA. It is only then that the FDA will assess this data. She encouraged ME/CFS advocates to amass "natural history" and group data for our patients.
Pat Furlong: Learning from Muscular Dystrophy


The last speaker was Pat Furlong from the Parent Project Muscular Dystrophy. She gave a history of the MD community from its early days of invisibility to a place of successful advocacy for muscular dystrophies. Like ME/CFS, for some types of muscular dystrophy there are no biomarkers. This has caused problems for MD advocates that are similar to many that we face.

Furlong said that her organization used the Cystic Fibrosis Foundation as a pattern for developing a model program. Their first step was to compile a patient registry. She detailed what she considered to be essentials for a strong program. The base would be a clinical infrastructure that included a patient registry, research networks, and a clear picture of desired endpoints.

Next would be advocacy, to bring in funds from the NIH, the DOD and the CDC, and to foster the direct engagement of regulators. Education of patients, clinical trials, and drug developers are all necessities. Clear goals and expectations are vital.

Parent Project Muscular Dystrophy's board put together a policy statement to guide towards what they wanted from the FDA in terms of advocacy. Meetings with the Center for Drug Evaluation & Research have been held concerning policy and data for the FDA.

A consulting firm is preparing a risk-benefit framework for rare diseases, for publication. The consulting firm is creating a parent survey on risk tolerance. The risk tolerance form will be submitted to the FDA. The PPMD wants to make clear to the FDA that in some situations, taking the drug is worth the risk for those with serious, life-threatening concerns. Some patients would very willingly bear those risks because the natural history has shown that some might become worse or even die if the drug was not approved by the FDA.
Questions and Answers


At this point, callers Patricia Carter, Jennifer Spotila, Marly Silverman, Courtney Miller and Hillary Johnson had an opportunity to be heard. At the end of the question and answer period, Steve Morin of the Office of Special Health Issues extended an invitation for others to submit any questions they have.

The Q & A time did not begin until we were an hour and a half into the webinar, leaving only about half an hour for those with questions. While this may have been quite frustrating for both the callers and listeners, there is the potential for more meetings to come.
What Next?


Two meetings have already been discussed for the foreseeable future. On Dec. 20 of this year, the FDA has scheduled an advisory committee meeting to discuss Ampligen, a drug that may be utilized for those with ME/CFS. Next year the FDA will have a meeting with the goal of discussing endpoints and outcome measures related to ME/CFS.

View the Post on the Blog

 

The stigma which Llewellyn King identifies as sloth is a very important idea. This is whatever the projection or conclusion is, which blocks hearing and a normal response. I would expand the idea of our stigma as sloth to also include lying and making special claims for oneself.( I know I am re-stating an old point.)If we were actually doing these things, I can understand why people would be repelled. This stigma has a life of its own which is more powerful than the facts. How families, people, can witness our lives year in and year out, and yet resist taking in the reality of these lives is extraordinary. But social fictions trumping reality have a long history.

 

How families, people, can witness our lives year in and year out, and yet resist taking in the reality of these lives is extraordinary.

What impresses me is how often I come across the opposite in people who have a friend or family member with ME. I know that many on PR have great difficulties with wilfully blind families and friends but on quite a few occasions when I've told a stranger that I have ME (usually when I'm trying to get them to donate money!) it turns out that they're all too well aware of how serious it is and that it's a real disease. They're also usually absolutely amazed to find that there are ME research charities that they could have been donating to for years if they'd only known about them.

I think it can often take first-hand experience of seeing a loved one before and after to realise what this illness is. However, a lot of people also have the first-hand experience of having a friend (mis)diagnosed with 'CFS' who has been completely 'cured' by something like the Lightning Process, which reinforces the idea of mental illness. There are a lot of factors at play here.

 

Yes, if we could set up such a meeting, I think it is crucial that we include an MS advocate for the reasons you mention. Perhaps Sandra Kweder or Richard Klein could provide us with the name of an MS advocate they have worked with (and, I think, an HIV/AIDS advocate).

Since the definition problem bedevils us, it might be good to include previous CFSAC members like Dr. Lenny Jason (he is a strong and prominent advocate in the Voices in the Shadows film). Current CFSAC members like Stephen Krafchik would be another strong, excellent addition. Both of them are experts in ME, well-regarded, well-spoken, and eminently reasonable advocates.

And, whether this was part of the same meeting, or a subsequent one, these would be key players:

Plus 4 others, all possessing the attributes ascribed to Lenny Jason and Stephen Krafchik, would have the required expert insight into our community's experience with Ampligen (they were all among co-authors of important March 14 2012 paper -- rintatolimod is the name for Ampligen):

• Staci Stevens (importantly, employing her objective cardiopulmonary exercise test to measure the primary endpoint of the study. I wonder if Sandra Kweder (FDA) is familiar with this test, given her comments about ME and objective tests).
• Dr. Lucinda Bateman
• Dr. Charles Lapp
• Dr. Dan Peterson

Plus 1 other that I can think of right now for his experience with Rituximab:

• Dr. Andy Kogelnik

Plus 1 other for her vast experience in the comparison between the treatment progress and lack thereof for HIV/AIDSand ME, respectively, in her fatigue clinic (divided between HIV/AIDS and ME patients):

• Dr. Nancy Klimas

The objectives of the meeting would have to be explicitly defined, with all the ancillary, thorny issues we face addressed, but only in service of the primary objective: getting drug treatments manufactured by the drug companies and approved by the FDA. (I think I heard one of the FDA reps say they sometimes do take the initiative in approaching drug manufacturers and saying, hey, take a look at this, what do you think...)

 

By the way, I hope I'm not bumming everyone out on this thread! I'm stuck in bed with some new bug at the moment and it's probably making it harder than usual to see the positives.

One thing I think we could do more of is preparing for things that we know are coming up so we can make the most of them. For example, we know that the results of the Lipkin study will be out one day (I have no clue when) - we could plan to be ready with soundbites and press release lists and well-argued, um, arguments and whatnot well in advance. We wouldn't have to know what the results of the study were going to be to do that. Similarly, we know that the psych lobby will inevitably come up with some new story to get themselves in the news sooner or later. That's actually an opportunity to try to get the other view into the media. We could plan for that. Though I'd advise not publicly on this forum! I'd like to see our established advocates working on that together and maybe farming out tasks to those others of us who are able, behind the scenes.

 

"Objective measures are limited. We don't have a marker in the blood or a marker and a muscle biopsy or something of that sort that has clearly been shown to predict the clinical course of disease. There are some that are subjective, but none are widely accepted or definitive. There is no question that the clinical trials and drug development have been constrained by these vectors," Dr. Kweder said. "Companies are likely to be reluctant to invest in developing a treatment that is surrounded by all of these uncertainties."

"There are other conditions that have had exactly these same challenges and are seeing the fruits of collaborative work between patient advocates and researchers and funders," Dr. Kweder went on to say. "Progress has been made by establishing definition of the clinical trial populations and targeted reliable measures to assess their symptoms and functioning, so I think this to me makes me very optimistic about CFS and ME."

In other conditions, "progress has been made by establishing definition of the clinical trial populations" ..

I personally cant see any big progress forward unless they start using something like the new International ME consensus criteria. They will never have any hope of learning about and defining the illness better unless they start using stricter definitions for research which will help to disclude other things. So my question is.. how does people make that happen? This is the big question I wish to know... Is anyone giving the ME/CFS community any idea how to bring this change about to get researchers using a good definition? Has this meeting shown a way forward in that area which is holding everything up? Is this meeting the help we need to move forward or not? (or is it another miss of the situation ME/CFS is currently in?)

Its a catch 22.. till there is good definiton (not a lot of different ones like there is now) and not all the controversy, it would be hard to get drug companies involved and this is why ME/CFS needs government funding..and lots of it too.

Getting the drug companies involved while using poor ME/CFS definations isnt going to end up helping ME patients much and even if they are testing drugs which may help us (eg the one which kills B cells).. the results are going to be screwed up unless they are using a good ME definition.

This was addressed in the meeting. It has to be a research definition. The CCC and the ICC are not research definitions - they are clinical definitions. Research definitions work best when they have the fewest possible elements and still differentiate between people who don't have a disease and those that do. The authors of the ICC know this and have stated that they are working on a research definition. In the meantime both Dr. Leonard Jason and Dr. Snell's group have found that PEM is the key symptom that differentiates between ME patients and others. PEM is actually not very common.

More important than definitions are biomarkers in any trial. Biomarkers that distinguish between people without a disease and patients with a disease are much better than definitions because they are objective. They are also a good way to subgroup.

 

The CCC and the ICC are not research definitions - they are clinical definitions.

To clarify, the ICC is both a clinical and a research definition. The International Consensus Panel is comprised of both clinicians and researchers, and the ME-ICC states that “the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers:”

The compulsory critical criteria allow comparable data to be collected in various locations and may assist in developing consistent biomarkers and further insights into the mechanism and aetiology of myalgic encephalomyelitis (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full).

Dr. Carruthers wrote in June that the ME Physicians' Primer and the International Symptom Scale were still in process:

What is in process for our ICC endeavour are the preparation of an ME Physicians’
Primer/Guidelines and the preparation and testing of an International Symptom Scale to improve cross-standardization of symptom questioning when comparing groups of patients where clinical epidemiological and other statistical studies are being planned (http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf).

The International Consensus Primer was published last month, and the International Symptom Scale is still expected. Neither of these documents represents a new definition.

 

thanks, Jodi, for the summary. I listened but was unable to take very thorough notes.

I like the ideas of going forward with meetings.

 

thanks, Jodi, for the summary. I listened but was unable to take very thorough notes.

I like the ideas of going forward with meetings.

Willow,

It would have been next to impossible to take notes on this. Fortunately my 22 year old son (who also has CFS) had set me up with some software to record it all, and I was able to go through it all later.

 

To me it is all Crazy, crazy>
So if you do have a narrow definition, this excludes CFS people outside that narrow definition.
The pharmaceutical companies spent billions of dollars on ulcer treatments which did not work, people paid heaps for these.
Then Marshall and ...? cured these with a few dollars of antibiotics.
Not sure if working from the top down works.
I am working from the bottom up.
Maybe we will meet in the middle.
Regards GcMAFie

 

So if you do have a narrow definition, this excludes CFS people outside that narrow definition.

Would this matter much if they all do in fact have the same illness as the narrowly defined (more severe group) when it comes to "research" definitions? and findings found in the more severe defined group, could only flow onto the other group too if they in fact have the same illness.

and if they didnt have the same illness .. making science progress in the narrowly defined group.. test findings would end up help distinguishing between the two groups... as certainly having a wide definition hasnt shown itself to be all that successful to progress at all.

 

Would this matter much if they all do in fact have the same illness as the narrowly defined (more severe group) when it comes to "research" definitions? and findings found in the more severe defined group, could only flow onto the other group too if they in fact have the same illness.

and if they didnt have the same illness .. making science progress in the narrowly defined group.. test findings would end up help distinguishing between the two groups... as certainly having a wide definition hasnt shown itself to be all that successful to progress at all.

I dont know tania. good point
i was trying to make some sort of point here tho.

 

I think AIDS is a special case. I agree it had huge disadvantages in terms of social prejudice but in terms of advocacy it had big differences from our situation: high prevalence in the gay population initially where there was already a strong community already used to advocacy (often a geographically close one), plus a sense of urgency because people were dying. I don't know even one other person with ME in the whole country because I've never formed a social life around my illness (except for posting here online).

I think MS in the days before it was understood would be a better model for us than AIDS. Was MS advocacy actually successful at that point? I only know MS as exactly that - multiple sclerosis, presumably named once the mechanism was understood. Were MS advocates successful before that?

MS is an interesting model for ME/CFS. Yesterday's Wall Street Journal described two new "pill form" MS treatments but indicated the understanding of the disease continues to evolve thus making it difficult to find effective and safe treatments.

http://forums.phoenixrising.me/index.php?threads/new-pill-form-ms-treatments-debut.20551/#post-312817

 

MS is an interesting model for ME/CFS. Yesterday's Wall Street Journal described two new "pill form" MS treatments but indicated the understanding of the disease continues to evolve thus making it difficult to find effective and safe treatments.

I think the interesting stage for us to study is not the current stage where the illness is understood to be multiple scleroses (scars) of the myelin tissue surrounding nerve fibres and the challenge is now to understand what is causing that, but the earlier stage when patients were (presumably) grouped by presenting similar symptoms but the demyelination hadn't been discovered. Before, in other words, they got their biomarker.

I'd love to hear what veterans of the MS struggle have to say about that period of time.

 

Just googled on 'multiple sclerosis activism 1980s' and got this link to an interesting history in a book called 'Emerging Illnesses and Society: Negotiating the Public Health Agenda' by RM Packard et al. - this link takes you to the relevant part of the book by some sort of google magic:

http://books.google.co.uk/books?id=...e&q=multiple sclerosis activism 1980s&f=false

Haven't read the whole thing but it seems that activism was spectacularly needed even when they knew what the disease was. There's a whole ton of stuff I don't know here!

 

Jody, thanks for the effort to give us such a good summary. My molasses-speed dialup connection can't show videos, so your report is most helpful.

1. Sloth - we are 'obviously' morally deficient, since most of us don't particularly look sick. There's no room for useless eaters.

2. We're not dying fast enough. Slowly dying, a little more each day, doesn't count

3. The FDA exists to promote the pharmaceutical industry and protect their profits. That's why we end up with so many drugs that do nothing useful except make rich people richer.

Although the FDA people spoke with nice words, here's what I heard:
"We're not going to talk to you unless you are a team player. That means you need to find a sugar-daddy establishment foundation to donate a million dollars to setup a lobbying/fundraising operation in Washington. This includes high-salary fundraiser executives and an ex-Congresscritter or two. Then you have to convince *us* that there are billions to be made by selling overpriced drugs to sick people who probably are poor and don't have much insurance. Only then will we consider the idea of prodding the drugs companies to do something."

"It will be a hard job to convince us because there is a chance that low-profit-potential treatments like Rich K's Simplified Methylation Protocol or Freddd's B12 Protocol might work. We're not going to test low-profit treatments. Nobody is. So just forget it."

"We admit our institution is broken, but we're not going to even attempt to fix it. The fact that sometimes patients actually benefit from our work is a happy side effect. Rock the boat and we'll slam the door in your face. Now get to work, you lazy welfare bums. It's your own fault there are no good treatments for your illness."

 

I find it very difficult how slow things move and I will go back to around 2007 when researchers used the most sophisticated testings on gulf war illness vets 'deployed and non deployed' and they had ALPHA INTERNAL IONIZATION RADIATION INJURIES' and this was broadcast on the Discovery Channel on u-tube and now the Pentagon invested $900,000.00 into this same research team and also they are finding the same in chronic fatigue syndrome patients either Alpha or Beta so when I hear their are no objective markers to deal with this illness that is a total pack of complete lies...All one has to do is Google now radiation illness and there are numerous possible treatment options that are almost close to some researchers using antibiotics even some work on prednisolone...Is chronic fatigue syndrome/gulf war illness a complete misdiagnosed illness that already exsists I believe 100% it is and on top of this if this is radiation is also a liability lawsuit that also gives us all a complete new diagnosis...I will let everyone know here my results as soon as I know more...Gail Kansky's team already announced radiation as a cause in their most recent newsletter and their medical board is convinced now the cause has been found and even Drs. Nancy Klimas and Peterson have found something at Bond University related to radiation sickness in cfs patients bloods, if this is the case we can put 'labels' like cfs gwi behind us once and for all...Getting 100% away from a diagnosis of cfs is the best thing that could ever happen to any of us because radiation is an accepted 'injury' see the national cfids foundation's website...Remember numerous accidents have happened in the past and also even hospitals have radiation accidents as well plus military dumpings plus numerous nuke testings plus military hardwares...Our greatest blessings ever is to fall into a category far far far away from cfs gwi and the likes of the Wesseley incompetents...It is also my understandings now from Gail that their are already serious top researchers now working on better treatment options and that Japan has an I.V. drug for radiation that can restore health in months to a year but must be given for life afterwards...Now we are dealing with the disaster in Japan on top of all of this now...If my blood shows radiation I am going to file a multi million dollar lawsuit in a London court house and that is a promise...MR AIDAN G WALSH SOUTHAMPTON, U.K.

 

Thanks for reporting on this, very interesting to read (as someone who does not have ME/CFS).

I do research on PTSD and traumatic brain injury and what I've found is that the public perception is greatly influenced by things they can quantify: biological markers, images on brain scans, anything that you can show them in a picture and they understand, which cannot be done for PTSD. Consequently, grants and financial interests are increasing for traumatic brain injury, while PTSD remains struggling and patients continue to commit suicide. The role of public perception influences journalists and they repeat the same myths about PTSD being "like a ghost" and that in turn then influences readers to continue to believe the myth.

If the solution is a vaccine or surgery or a Big Pharma pill, then the funding will appear and the agencies will get on board. If the solution is complicated, then the cycle of myths and hand wringing continues and it's a real struggle to move forward.

So to some extent, the marker, whatever it is, for a diagnosis is key (the definition). Glad to see discussion on that and specific names of individuals.

"3. The FDA exists to promote the pharmaceutical industry and protect their profits. That’s why we end up with so many drugs that do nothing useful except make rich people richer."

Excellent point. And unfortunately, the US Empire is getting more corrupt by the minute, meaning that even things like the FDA will become even less functional and more prone to influence.

I think its important to continue to think outside the box. This forum is a remarkable asset. I think people lose sight of the importance of such assets relative to a pharmaceutical solution from an FDA. I was originally on a B-12 forum elsewhere, and using Fredd's protocol, and greatly improved, so stopped using it, and when I came back, it was dead -- I was really shocked, as though the rug pulled out from under me. Access to the knowledge of people from all over the world was suddenly gone! But eventually I found the trail over to this forum, where Fredd had appeared also, and was amazed at how well this forum is organized, how efficient and supportive and functional it is. I can never keep up with all the information -- and good information -- appearing on here all the time.

 

I find it very difficult how slow things move and I will go back to around 2007 when researchers used the most sophisticated testings on gulf war illness vets 'deployed and non deployed' and they had ALPHA INTERNAL IONIZATION RADIATION INJURIES' and this was broadcast on the Discovery Channel on u-tube and now the Pentagon invested $900,000.00 into this same research team and also they are finding the same in chronic fatigue syndrome patients either Alpha or Beta so when I hear their are no objective markers to deal with this illness that is a total pack of complete lies...All one has to do is Google now radiation illness and there are numerous possible treatment options that are almost close to some researchers using antibiotics even some work on prednisolone...Is chronic fatigue syndrome/gulf war illness a complete misdiagnosed illness that already exsists I believe 100% it is and on top of this if this is radiation is also a liability lawsuit that also gives us all a complete new diagnosis...I will let everyone know here my results as soon as I know more...Gail Kansky's team already announced radiation as a cause in their most recent newsletter and their medical board is convinced now the cause has been found and even Drs. Nancy Klimas and Peterson have found something at Bond University related to radiation sickness in cfs patients bloods, if this is the case we can put 'labels' like cfs gwi behind us once and for all...Getting 100% away from a diagnosis of cfs is the best thing that could ever happen to any of us because radiation is an accepted 'injury' see the national cfids foundation's website...Remember numerous accidents have happened in the past and also even hospitals have radiation accidents as well plus military dumpings plus numerous nuke testings plus military hardwares...Our greatest blessings ever is to fall into a category far far far away from cfs gwi and the likes of the Wesseley incompetents...It is also my understandings now from Gail that their are already serious top researchers now working on better treatment options and that Japan has an I.V. drug for radiation that can restore health in months to a year but must be given for life afterwards...Now we are dealing with the disaster in Japan on top of all of this now...If my blood shows radiation I am going to file a multi million dollar lawsuit in a London court house and that is a promise...MR AIDAN G WALSH SOUTHAMPTON, U.K.

I don't know about radiation sickness as a cause, but I like your spirit!

 

Jody, thanks for the effort to give us such a good summary. My molasses-speed dialup connection can't show videos, so your report is most helpful.

1. Sloth - we are 'obviously' morally deficient, since most of us don't particularly look sick. There's no room for useless eaters.

2. We're not dying fast enough. Slowly dying, a little more each day, doesn't count

3. The FDA exists to promote the pharmaceutical industry and protect their profits. That's why we end up with so many drugs that do nothing useful except make rich people richer.

Although the FDA people spoke with nice words, here's what I heard:
"We're not going to talk to you unless you are a team player. That means you need to find a sugar-daddy establishment foundation to donate a million dollars to setup a lobbying/fundraising operation in Washington. This includes high-salary fundraiser executives and an ex-Congresscritter or two. Then you have to convince *us* that there are billions to be made by selling overpriced drugs to sick people who probably are poor and don't have much insurance. Only then will we consider the idea of prodding the drugs companies to do something."

"It will be a hard job to convince us because there is a chance that low-profit-potential treatments like Rich K's Simplified Methylation Protocol or Freddd's B12 Protocol might work. We're not going to test low-profit treatments. Nobody is. So just forget it."

"We admit our institution is broken, but we're not going to even attempt to fix it. The fact that sometimes patients actually benefit from our work is a happy side effect. Rock the boat and we'll slam the door in your face. Now get to work, you lazy welfare bums. It's your own fault there are no good treatments for your illness."

Glad to do it jimells. I would have been lost without the software my son set up for me to record it all. I needed to go over it to be able to get a grasp of what was being said.

 

Thanks for reporting on this, very interesting to read (as someone who does not have ME/CFS).

I do research on PTSD and traumatic brain injury and what I've found is that the public perception is greatly influenced by things they can quantify: biological markers, images on brain scans, anything that you can show them in a picture and they understand, which cannot be done for PTSD. Consequently, grants and financial interests are increasing for traumatic brain injury, while PTSD remains struggling and patients continue to commit suicide. The role of public perception influences journalists and they repeat the same myths about PTSD being "like a ghost" and that in turn then influences readers to continue to believe the myth.

If the solution is a vaccine or surgery or a Big Pharma pill, then the funding will appear and the agencies will get on board. If the solution is complicated, then the cycle of myths and hand wringing continues and it's a real struggle to move forward.

So to some extent, the marker, whatever it is, for a diagnosis is key (the definition). Glad to see discussion on that and specific names of individuals.

"3. The FDA exists to promote the pharmaceutical industry and protect their profits. That’s why we end up with so many drugs that do nothing useful except make rich people richer."

Excellent point. And unfortunately, the US Empire is getting more corrupt by the minute, meaning that even things like the FDA will become even less functional and more prone to influence.

I think its important to continue to think outside the box. This forum is a remarkable asset. I think people lose sight of the importance of such assets relative to a pharmaceutical solution from an FDA. I was originally on a B-12 forum elsewhere, and using Fredd's protocol, and greatly improved, so stopped using it, and when I came back, it was dead -- I was really shocked, as though the rug pulled out from under me. Access to the knowledge of people from all over the world was suddenly gone! But eventually I found the trail over to this forum, where Fredd had appeared also, and was amazed at how well this forum is organized, how efficient and supportive and functional it is. I can never keep up with all the information -- and good information -- appearing on here all the time.

Victronix,

I'm glad it provided useful information for people. That's interesting, and troubling, information about PTSD. I see the similarities. I agree we need to think outside the box. If the medical community comes up with something to help us, well and good. My personal approach has been to walk away from the conventional medical community since it has never given me any practical help with my illness and look for answers elsewhere. Fortunately for me the naturopathic community has made great strides possible for me.