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

November 19, 2012

by Jody Smithhands around the world

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.

50 comments

{ 50 comments… read them below or add one }

SpecialK82 November 19, 2012 at 7:32 pm

Thanks Jody for your insight and notes from the meeting.

While I too was frustrated at the beginning of the meeting, I was happy to see that they agreed to extend the meeting by an hour. Many of the thing Sandra Kweder discussed were also mentioned at the CFSAC but I suppose she cannot assume that it's the exact same audience and I guess you have to start somewhere.

Having said that, I have also been impressed with Sandra Kweder in general in these last few meetings, and I feel that she is on the ball. She may be willing to really get this stuff rolling for us, I'm happy so far with the schedule of meetings that they are having for us. What I'd like to see is this community accept the hand that she/the FDA is offering. If they would like to calmly and rationally discuss the issue, then we need to be right there at the table.

I thought the inclusion of Mary Dwight and Pat Furlong was brilliant. The FDA showed us other illnesses that weren't getting their share of the attention, and let them tell us how they turned it around. These ladies described, in broad strokes, how they got some action. They felt totally partnered with the FDA, and at times they were frustrated, but they figured out how to work through the obstacles.

I have felt for a long time that we really have to learn from other illnesses and their successful advocacy campaigns. No one illness will fit all the problems that the ME/CFS Community faces, but when we learn several of these models, we could could cut and paste our own effective campaign.

As I said in another thread, I'm a bit tired of hearing only a venting of frustration when patients get a turn to speak to government agencies, yes the frustration is justified, but it's time that we sit down with them and do the tough work it takes to figure out solutions. When we only vent about past bad treatment, it may make us feel better for the moment but it does nothing to move the ball forward. In fact, it probably makes coordinating the next meeting more difficult.
I was also somewhat offended when some of the patient callers seem to attack Mary Dwight/Pat Furlong. These ladies did nothing but take personal time out of their day to try to educate and inspire the ME/CFS Community. I would love nothing more if one or both of these women would agree to mentor an ME/CFS advocacy group. Maybe we could actually learn something if we go in to it with an open mind and spirit.

Kati November 20, 2012 at 12:21 am

special K you said: "As I said in another thread, I'm a bit tired of hearing only a venting of frustration when patients get a turn to speak to government agencies, yes the frustration is justified, but it's time that we sit down with them and do the tough work it takes to figure out solutions. When we only vent about past bad treatment, it may make us feel better for the moment but it does nothing to move the ball forward. In fact, it probably makes coordinating the next meeting more difficult.
I was also somewhat offended when some of the patient callers seem to attack Mary Dwight/Pat Furlong. These ladies did nothing but take personal time out of their day to try to educate and inspire the ME/CFS Community. I would love nothing more if one or both of these women would agree to mentor an ME/CFS advocacy group. Maybe we could actually learn something if we go in to it with an open mind and spirit."

Well said, I agree.

taniaaust1 November 20, 2012 at 1:03 am


"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.

heapsreal November 20, 2012 at 3:28 am

Thanks for all your work on this Jody, we appreciate the time u put in.

cheers!!

justy November 20, 2012 at 3:43 am

Thanks Jody – although over in the UK i follow the situation in the states closely. For me in the UK it is a great hope to me that things are moving forward in the states, this way they will move forward for all of us throughout the world. (of course not forgetting the work of many researchers around the world)
All the best,
Justy

Enid November 20, 2012 at 3:50 am

Thanks Jody – there is so little happening in the UK, it good to to see how investigations/research continue so well overseas.

Jody November 20, 2012 at 7:19 am


SpecialK82

Thanks Jody for your insight and notes from the meeting.

While I too was frustrated at the beginning of the meeting, I was happy to see that they agreed to extend the meeting by an hour. Many of the thing Sandra Kweder discussed were also mentioned at the CFSAC but I suppose she cannot assume that it's the exact same audience and I guess you have to start somewhere.

Having said that, I have also been impressed with Sandra Kweder in general in these last few meetings, and I feel that she is on the ball. She may be willing to really get this stuff rolling for us, I'm happy so far with the schedule of meetings that they are having for us. What I'd like to see is this community accept the hand that she/the FDA is offering. If they would like to calmly and rationally discuss the issue, then we need to be right there at the table.

I thought the inclusion of Mary Dwight and Pat Furlong was brilliant. The FDA showed us other illnesses that weren't getting their share of the attention, and let them tell us how they turned it around. These ladies described, in broad strokes, how they got some action. They felt totally partnered with the FDA, and at times they were frustrated, but they figured out how to work through the obstacles.

I have felt for a long time that we really have to learn from other illnesses and their successful advocacy campaigns. No one illness will fit all the problems that the ME/CFS Community faces, but when we learn several of these models, we could could cut and paste our own effective campaign.

As I said in another thread, I'm a bit tired of hearing only a venting of frustration when patients get a turn to speak to government agencies, yes the frustration is justified, but it's time that we sit down with them and do the tough work it takes to figure out solutions. When we only vent about past bad treatment, it may make us feel better for the moment but it does nothing to move the ball forward. In fact, it probably makes coordinating the next meeting more difficult.
I was also somewhat offended when some of the patient callers seem to attack Mary Dwight/Pat Furlong. These ladies did nothing but take personal time out of their day to try to educate and inspire the ME/CFS Community. I would love nothing more if one or both of these women would agree to mentor an ME/CFS advocacy group. Maybe we could actually learn something if we go in to it with an open mind and spirit.

SpecialK82,

We can hope that something worthwhile can come from this.

I agree that Mary Dwight and Pat Furlong were great. Their experience could prove to be very helpful for us. Perhaps a time of change is upon us.

Jody November 20, 2012 at 7:25 am


heapsreal

Thanks for all your work on this Jody, we appreciate the time u put in.

cheers!!

Heapsreal,

Happy to do it. Thanks. :)

Jody November 20, 2012 at 7:27 am


justy

Thanks Jody – although over in the UK i follow the situation in the states closely. For me in the UK it is a great hope to me that things are moving forward in the states, this way they will move forward for all of us throughout the world. (of course not forgetting the work of many researchers around the world)
All the best,
Justy

Justy,

I don't live in the States myself. I'm in Canada so changes in the U.S. aren't going to have any direct effect on me either. But as you say, changes in the States can cause ripples of change on this throughout the world.

Jody November 20, 2012 at 7:28 am


Enid

Thanks Jody – there is so little happening in the UK, it good to to see how investigations/research continue so well overseas.

Enid,

Let's hope that any changes happening in the U.S. will have an effect outside its borders.

Nielk November 20, 2012 at 8:39 am

Thanks Jody for this comprehensive outline of the FDA meeting. There is no way that I could have followed this for 2 hours myself.

Any open dialogue is a step in the right direction. I think that it is very hopeful that the FDA is even trying to address ME/CFS and willing to work with us.

In addition, I agree that we need to learn from others' successes that have come before us. This is very instructive.

Jody said:

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

I have wondered about this problem for a long time. Why is it that our loved ones are not rallying for us? I know that many of us have support from family members or friends but, it doesn't translate in "fighting" for us. Why is that?.

Jody November 20, 2012 at 8:50 am


Nielk

I have wondered about this problem for a long time. Why is it that our loved ones are not rallying for us? I know that many of us have support from family members or friends but, it doesn't translate in "fighting" for us. Why is that?.

Nielk,

Cort said something once a few years ago about this lack of family involvement we have, compared to other patient groups. I'd been sick for many years when he said this, and had lived with very little family interest and involvement in my own family all that time and yet … until that moment it had never really gelled in my head (now there's imagery:)).

I have wondered about this ever since. Does it say something about the type of families we come from? Something about our DNA? Something about theirs? Do so few of our family members believe we are in the dire straits we say we are in?

Lots of questions begin to emerge, no answers though, at least I don't know them.

Sasha November 20, 2012 at 9:40 am


Jody

Cort said something once a few years ago about this lack of family involvement we have, compared to other patient groups. I'd been sick for many years when he said this, and had lived with very little family interest and involvement in my own family all that time and yet … until that moment it had never really gelled in my head (now there's imagery:)).

I have wondered about this ever since. Does it say something about the type of families we come from? Something about our DNA? Something about theirs? Do so few of our family members believe we are in the dire straits we say we are in?

Lots of questions begin to emerge, no answers though, at least I don't know them.

This is an interesting question. I've been lucky enough to always have unquestioning support in my illness from my family. Last week, I was complaining to my sister about how my application for disability benefits was being treated by the government department responsible – this specific issue is a national scandal (literally – in the TV news, the doctors' union coming out against the government's handling of it, and so on) and she asked me what she could do. I didn't know, apart from write to her MP – I've done that to my MP and just got the brush-off.

I don't know what to tell her to do to help with the ME situation, other than try to raise money for research (which she does). There's no campaign for her and others like her to join. I don't even feel there's one for me to join. I don't know what action to take.

Is this the difference between ME, MS, AIDS and these other groups? Not that our families or their attitudes are different but that there's no clear course of action?

Do we need a roadmap?

Jody November 20, 2012 at 9:54 am


Sasha

This is an interesting question. I've been lucky enough to always have unquestioning support in my illness from my family. Last week, I was complaining to my sister about how my application for disability benefits was being treated by the government department responsible – this specific issue is a national scandal (literally – in the TV news, the doctors' union coming out against the government's handling of it, and so on) and she asked me what she could do. I didn't know, apart from write to her MP – I've done that to my MP and just got the brush-off.

I don't know what to tell her to do to help with the ME situation, other than try to raise money for research (which she does). There's no campaign for her and others like her to join. I don't even feel there's one for me to join. I don't know what action to take.

Is this the difference between ME, MS, AIDS and these other groups? Not that our families or their attitudes are different but that there's no clear course of action?

Do we need a roadmap?

The fact that we lack such basic things as a clear and proper definition of the condition, that there are probably so many different kinds of syndromes or illnesses that are under the umbrella … right here is another problem, we do not even have a name we can call it that all of us are comfortable with and that the medical community are in agreement on. And that is no fault of the patient community, just one more indication of the confusion that still surrounds and permeates our illness.

But what Cort had mentioned that time a few years ago and what stuck with me was, Where are the families fighting for their sick? They've been there for AIDS, for autism, for various kinds of cancer, and the list goes on. The sick people were not the ones who had to do it. Even with all the confusion and uncertainty inherent in our situation, the lack of other people putting us in the news, running campaigns of different types for us, they have just not been happening.

When AIDS first hit the news, at least as I recall it, there was alot of uncertainty as to what was being dealt with, research results took some time to get anywhere, and AIDS had the added whammy of the whole prejudice against homosexuals, the notion that this was divine judgment and what "they" had coming and so forth, people with AIDS were being shunned, fired and kicked out of places. So there was quite a mess there for a long time.

And yet. People rallied for them. As in all this time nobody has rallied for us.

The average mom or dad is not going to be able to launch a grassroots campaign or organization or series of events for us. Your sister, and my mom and cousin who, outside of my husband and kids were the only family members who have seemed to bat an eye for me, they can't just start something on their own.

It does take certain types of people with certain areas of expertise and contacts I think for that sort of thing. But … other groups have such people who appear on the scene and the average mom or dad or friend is able to join them. Or so it seems to me.

Maybe the webinar will turn out to be part of the road map for us.

Sasha November 20, 2012 at 10:19 am

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?

waiting November 20, 2012 at 11:47 am


Jody

But what Cort had mentioned that time a few years ago and what stuck with me was, Where are the families fighting for their sick? They've been there for AIDS, for autism, for various kinds of cancer, and the list goes on. The sick people were not the ones who had to do it. Even with all the confusion and uncertainty inherent in our situation, the lack of other people putting us in the news, running campaigns of different types for us, they have just not been happening.

When AIDS first hit the news, at least as I recall it, there was alot of uncertainty as to what was being dealt with, research results took some time to get anywhere, and AIDS had the added whammy of the whole prejudice against homosexuals, the notion that this was divine judgment and what "they" had coming and so forth, people with AIDS were being shunned, fired and kicked out of places. So there was quite a mess there for a long time.

And yet. People rallied for them. As in all this time nobody has rallied for us.

The average mom or dad is not going to be able to launch a grassroots campaign or organization or series of events for us. Your sister, and my mom and cousin who, outside of my husband and kids were the only family members who have seemed to bat an eye for me, they can't just start something on their own.

It does take certain types of people with certain areas of expertise and contacts I think for that sort of thing. But … other groups have such people who appear on the scene and the average mom or dad or friend is able to join them. Or so it seems to me.

Maybe the webinar will turn out to be part of the road map for us.

Regarding the lack of support:

This article by Llewellyn King accurately pinpointed the essence of our problem, I believe. A quote from the article:

"There are parallels as well as dissimilarities to the early days of the AIDS. For AIDS, the stigma was sexual; for ME/CFS, the stigma is sloth."

Regarding next steps:

As a (new) starting point, what do other PR members think about the Coalition for ME/CFS (www.coalition4mecfs.org/), of which PR is already a member, perhaps along with the CAA, requesting a meeting with Mary Dwight and Pat Furlong? We'd have to go in very well prepared (vast, thorny topic) with a well-planned agenda (to make best use of their time) and a person who is a professional facilitator (I think some of our PR members have this expertise and could perhaps help select someone?).

Sasha November 20, 2012 at 12:15 pm

Interesting 'sloth' quote. I think that's exactly the stigma we're facing.

Did MS, in the days before it was understood, have the same 'it's all in their heads' stigma and if so, did they overcome it before the objective signs of disease were shown? Or did their successful advocacy only begin afterwards?

Aileen November 20, 2012 at 12:23 pm


waiting

Regarding the lack of support:
for ME/CFS, the stigma is sloth."

exactly… I think a lot of people are of the opinion: "If you won't help yourself, why should I help you?" The point is that we are, as best we can, but they don't understand this. I wish we had something people could put on, like one of those "empathy bellies" that stimulate what it is like to be pregnant, so that people could understand some of what we go through. :( How about a specially-made lead-weighted unitard? o_O

Regarding next steps:

As a (new) starting point, what do other PR members think about the Coalition for ME/CFS (www.coalition4mecfs.org/), of which PR is already a member, perhaps along with the CAA, requesting a meeting with Mary Dwight and Pat Furlong? We'd have to go in very well prepared (vast, thorny topic) with a well-planned agenda (to make best use of their time) and a person who is a professional facilitator (I think some of our PR members have this expertise and could perhaps help select someone?).

Sounds like an excellent idea to me.

waiting November 20, 2012 at 1:23 pm


Sasha

Interesting 'sloth' quote. I think that's exactly the stigma we're facing.

Did MS, in the days before it was understood, have the same 'it's all in their heads' stigma and if so, did they overcome it before the objective signs of disease were shown? Or did their successful advocacy only begin afterwards?

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.

Sing November 20, 2012 at 3:11 pm

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.

Sasha November 20, 2012 at 3:19 pm


Sing

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.

waiting November 20, 2012 at 3:34 pm


waiting

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…)

Sasha November 20, 2012 at 3:40 pm

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.

Kelly November 20, 2012 at 4:02 pm


taniaaust1

"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.

Ember November 20, 2012 at 4:49 pm


Kelly

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.

WillowJ November 20, 2012 at 6:21 pm

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

I like the ideas of going forward with meetings.

Jody November 20, 2012 at 6:27 pm


WillowJ

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.

GcMAF Australia November 20, 2012 at 11:33 pm

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

taniaaust1 November 21, 2012 at 1:51 am


GcMAF Australia

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.

GcMAF Australia November 21, 2012 at 1:56 am


taniaaust1

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.

Gemini November 21, 2012 at 10:32 am


Sasha

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

Sasha November 21, 2012 at 11:41 am


Gemini

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.

Sasha November 21, 2012 at 11:54 am

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!

jimells November 21, 2012 at 7:50 pm

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."

MR AIDAN G WALSH November 22, 2012 at 4:22 am

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.

Victronix November 22, 2012 at 2:46 pm

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.

Sing November 22, 2012 at 8:29 pm


MR AIDAN G WALSH

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 November 23, 2012 at 8:20 am


jimells

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.

Jody November 23, 2012 at 8:26 am


Victronix

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.

Jody November 23, 2012 at 8:35 am

Half-baked theory here, or more of a question, really.

On the subject of why we do not have the familial support that goes to the wall for us in terms of lobbying, writing campaigns, rallies, fund-raising, et al. …. I have read mentions here and there over the last few years about a possible correlation between ME/CFS and Aspergers/autism. I have seen it in my own family once I became aware of Aspergers syndrome.

Many of us have families that are not nurturing and supportive, many others of us have families who we know love us and who show it in many ways and yet in other, puzzling, ways we find a vacuum when it comes to understanding, empathy and a certain type of reaching out from our family members. Some of us find that talking at all about what we go through can bring any number of inappropriate reactions — irritation, anger, or down to the milder end of the scale — a nodding of the head as we talk about devastation as though we had just said I had a boiled egg for breakfast. Dismissal, even though done in a pleasant manner.

Is it possible that the … absence of familial response on the scale of networking, campaigning, etc. might be due to a large proportion of Aspergers or autism in the mix?

It is a question that has crossed my mind, as I look at the (lack of) response my condition gets from my family, who are all people who love me, and who would all be astonished if I were ever able to get it through to them that I needed serious help and that they should do something about that.

Sing November 23, 2012 at 8:59 am


jimells

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

"jimelis, i really laughed to read this–"We're not dying fast enough." and "There's no room for useless eaters."

And I appreciated the rest of your insightful post.

Sing November 23, 2012 at 9:23 am


Jody

Half-baked theory here, or more of a question, really.

On the subject of why we do not have the familial support that goes to the wall for us in terms of lobbying, writing campaigns, rallies, fund-raising, et al. …. I have read mentions here and there over the last few years about a possible correlation between ME/CFS and Aspergers/autism. I have seen it in my own family once I became aware of Aspergers syndrome.

Many of us have families that are not nurturing and supportive, many others of us have families who we know love us and who show it in many ways and yet in other, puzzling, ways we find a vacuum when it comes to understanding, empathy and a certain type of reaching out from our family members. Some of us find that talking at all about what we go through can bring any number of inappropriate reactions — irritation, anger, or down to the milder end of the scale — a nodding of the head as we talk about devastation as though we had just said I had a boiled egg for breakfast. Dismissal, even though done in a pleasant manner.

Is it possible that the … absence of familial response on the scale of networking, campaigning, etc. might be due to a large proportion of Aspergers or autism in the mix?

It is a question that has crossed my mind, as I look at the (lack of) response my condition gets from my family, who are all people who love me, and who would all be astonished if I were ever able to get it through to them that I needed serious help and that they should do something about that.

Thank you for expressing this, Jody. Exactly! In some cases I see the lack of response as part of a general lack of empathy in certain individuals, but overall I understand this problem, our problem, as not having a place on the social map. Once I read a book which exposed me to a very powerful idea–that our ideas about realtiy are socially constructed much more than being factually true. The book's title was The Social Construction of Reality. It was a sophisticated look at our world by a very adept Sociologist.

Perhaps, in order to enter into the social map, we first have to enter into the imaginations of people. So, theatrical presentations–think of large puppets, film and story–this has often been how an invisible or incorrectly perceived group has been able to enter into social reality. Think of how Harriet Beecher Stowe's Uncle Tom's Cabin affected so many to become Abolitionists. For the first time, through a story, many were able to see the humanity of slaves. There are examples of other powerful books (now they would be films probably) which enabled people to "get it": Diary of Anne Frank; certain films and stories which showed the reality of Native Americans; The Gulag Archipelago; the theatrical presentations gay men rolled out to communicate their reality and plight with AIDS.

As one low-energy person trying to connect with others, including sharing my physical reality, I have come up with potent pictures and scenarios in words–a theatrical approach–to break out of the limited ordinary assumptions, and present something different. I dramatize in order to communicate. In this I am not attacking, criticizing, blaming others but including them, aiming to include them in some understanding. Imagine a big puppet show. It may seem funny but this is a lot of how people learn. We teach children this way, through stories and imaginative means.

In other words, we may need to enter the imagination first, present our realtiy there. This is not science but social science. And it employs art, theatre, literature–to make the point.

Victronix November 23, 2012 at 10:55 am

"I would have been lost without the software my son set up for me to record it all."

That's great. Can you tell me what you used?

When my B-12 deficiency first started it manifested as my writing hand becoming useless and I found that by using a voice recognition software, Dragon Naturally Speaking, I was able to write and send emails and documents. I don't recommend it, though. Today an app that came on our ipad is far easier and more accurate, but only does brief recordings.

Jody November 23, 2012 at 11:58 am

Victronix,

I will find out from him and post it here.

Victronix November 23, 2012 at 3:20 pm

"Is it possible that the … absence of familial response on the scale of networking, campaigning, etc. might be due to a large proportion of Aspergers or autism in the mix?"

Yes, that's a fascinating connection to have made.

After years of supportive therapy I was able to work with my therapist to help me to engage my father enough to get him to help me out financially. Ultimately that led to my having the nutrient tests that changed my life, at that point, and I think when he saw that, it did get him more involved and understanding of how he could help.

He is somewhat Aspergers in nature, very self centered and self focused, unable to express empathy. He was convinced that his sister's schizophrenia was because "she just had too much time on her hands, never having had a job".

Perhaps if the community becomes aware that the families may have this stumbling block, concerted careful and supported efforts at direct outreach can help bring about change. For me it took years of therapy and self-help books to get to that level with myself to get past the resentment and blame to be able to present a potential constructive role to him.

Mine started with a long letter that I worked out over weeks. In response, I received a check, which was a pretty awful feeling. But that was just the beginning.

MR AIDAN G WALSH November 27, 2012 at 8:23 am


Victronix

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.

thanks for your reply, appreciated Aidan…blesses…

MR AIDAN G WALSH November 27, 2012 at 8:38 am


Sing

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

Thanks very much…hate everything about the corrupt medical 'legal mafia' all part of the Iluminatii's pure corrupt b.s. 'pray I die and not get well' I will continue to expose their complete filth, wish I could tell every person to go out and donate bloods but that would be wrong but feel the only way forward is a multi million dollar lawsuit plus full public and criminal inquiries…will not try them in the medias because even our medias are completely controlled and owned by the filth but in the meantime I use facebook twitter and myspace to voice my anger…there is no doubt in my mind that simon the weasle wessely sits in the back pockets of the illuminatii's he is just another puppet but the suprise for him is forthcoming because all this time he works on bloods containing radiation and it's just a matter of time now before he takes the sickness plunge…they say in life what goes around comes around…it's way far gone into the worlds foods supplies plus fish and livestocks, it's everywhere and now Japan just made it more worse…the f.d.a. c.d.c. and n.i.h. are all puppets of the rothschild's elite scumbags and that's 100% fact…radiation planned the 'silent invisible genocide of the 21st century…ebv, xmrv comedy at its best…total disgrace to every sick child, they better pray Aidan dies…p.s. what goes around comes around…

MR AIDAN G WALSH November 27, 2012 at 8:47 am


Jody

Half-baked theory here, or more of a question, really.

On the subject of why we do not have the familial support that goes to the wall for us in terms of lobbying, writing campaigns, rallies, fund-raising, et al. …. I have read mentions here and there over the last few years about a possible correlation between ME/CFS and Aspergers/autism. I have seen it in my own family once I became aware of Aspergers syndrome.

Many of us have families that are not nurturing and supportive, many others of us have families who we know love us and who show it in many ways and yet in other, puzzling, ways we find a vacuum when it comes to understanding, empathy and a certain type of reaching out from our family members. Some of us find that talking at all about what we go through can bring any number of inappropriate reactions — irritation, anger, or down to the milder end of the scale — a nodding of the head as we talk about devastation as though we had just said I had a boiled egg for breakfast. Dismissal, even though done in a pleasant manner.

Is it possible that the … absence of familial response on the scale of networking, campaigning, etc. might be due to a large proportion of Aspergers or autism in the mix?

It is a question that has crossed my mind, as I look at the (lack of) response my condition gets from my family, who are all people who love me, and who would all be astonished if I were ever able to get it through to them that I needed serious help and that they should do something about that.

I agree at what you wrote above but the mark on all auto immune conditions will turn out to be radiation…cfs gulf war illness and all above are just 'labels' like tags doctors pin on donkeys tails…radiation is already known by these researchers as a marker for all auto immune conditions including children with AUTISM…AIDAN G WALSH…P.S. there is no difference in non deployed, deployed gulf war illness and cfs 100% identicle 'LABELS' RADIATION WITH BROKEN CHROMOSONES AND TRANSLOCATION…IMAGINE HEALTHY ONE DAY EATING A FISH WITH RADIATION AND YOUR LIFE STOPS…A RADIOLOGICAL DISASTER THE 21ST CENTURY MEDICAL COVER-UP…

Kelly November 30, 2012 at 5:48 pm


Sasha

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?

Many diseases have been down this road even cancer! If you want to learn more about MS you might want to read this book: http://www.nejm.org/doi/full/10.1056/NEJMbkrev0804949

The review states in part: "..The best aspect of the book is Talley's discussion of multiple sclerosis societies that are dominated by laypersons and of the differing roles of such societies in various countries as reflections of the unique social structure of each country. The National Multiple Sclerosis Society of the United States is held up as an example of a successful advocacy group, with its ability to raise public awareness, to attract useful publicity, to persuade influential persons to participate, to provide effective political pressure to change public policy, and to persistently advocate further change, while at the same time providing services and support to patients. There are lessons here for other advocacy groups…"

Sasha December 1, 2012 at 3:20 am


Kelly

Many diseases have been down this road even cancer! If you want to learn more about MS you might want to read this book: http://www.nejm.org/doi/full/10.1056/NEJMbkrev0804949

The review states in part: "..The best aspect of the book is Talley's discussion of multiple sclerosis societies that are dominated by laypersons and of the differing roles of such societies in various countries as reflections of the unique social structure of each country. The National Multiple Sclerosis Society of the United States is held up as an example of a successful advocacy group, with its ability to raise public awareness, to attract useful publicity, to persuade influential persons to participate, to provide effective political pressure to change public policy, and to persistently advocate further change, while at the same time providing services and support to patients. There are lessons here for other advocacy groups…"

Thanks, Kelly – looks interesting.

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