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Discussions and Comments Re: Millions Missing Protest Demands

Should the MillionsMissing Protest Demands and/or comments solicited be discussed publicly?

  • No

    Votes: 0 0.0%
  • Somewhat

    Votes: 0 0.0%

  • Total voters
Virginia USA
I had asked a couple of places if there would be any public sharing of comments and concerns gathered in association with the MillionsMissing Protest Demands and the only response I received directed me to come here if I wanted to have any sort of discussion forum.

SO, I figure I will at the very least share my comments and concerns and maybe someone, anyone else might have some input and perhaps even want to share their thoughts and feelings. I think it's important to know and understand what others are thinking rather than to be a bunch of separate entities with our own individual thoughts. If we can understand each other we might actually realize that someone else has a better idea or some reason for doing things which we haven't thought of. Or, there might be things which we can share with others to help them understand things they don't know about. I certainly have much to learn and would really appreciate hearing from others. I think we will be stronger by working together this way as opposed to working as independent agents each in our own worlds.

I saw someone else post a concern on Facebook as well indicating that their feeling is that only ME should be used, not CFS/ME. I feel as though there should be a discussion on that, perhaps THEN followed by a poll and decision by committee. It just seems as though it makes it difficult for the community to be able to make informed decisions if they aren't able to hear about why different people feel one way versus another. I'd feel a lot more comfortable about a group representing my interests if I knew that there were open discussions about issues, allowing for all of us to disseminate information as our brains are coaxed to expell more by contextual clues from other people's sharing of their thoughts and feelings. I dislike the thought of people making decisions when they might not even know about reasons for why they should think about other possibilities.

I figured I would share the other person's concern prior to my comments since mine are lengthy and I didn't want theirs to be lost at the end. I'll just paste what I wrote in the survey broken up into each of the four sections. The first section is the lengthiest as I tried to address my generic thoughts for the entire document first so I wouldn't have to repeat myself. Hopefully I don't lose everyone, I fully understand how difficult it is to read my drivel and I apologize for that. I wish I had my old brain back to be able to edit, organize and stay succinct. Now, I always have a feeling that everything is important.

MillionsMissing Protest Demands


1st, I don't understand what the regional delineation is supposed to mean. I can harbor a guess, but it's also a matter of how the NIH decides to interpret it. I envision issues with insurance companies or disability claims in that they might require patients to travel great distances to the closest ME/CFS facility for testing in order to not only provide benefits but also continue to provide disability benefits. I fear the introduction of some facilities, especially ones that are partially federally funded, will make it even more difficult for patients in many ways.

Similar to the way things are going in association with the War on Drugs, I'm more fearful that fewer physicians will be willing to help any patients if there is any sort of alternative where they can point patients towards for treatment and not have to risk their own neck/license. Most doctors have no qualms about doing things which are incredibly detrimental for patients just to protect themselves. I think we all know how many things can affect us and make us much worse and only WE should be able to decide what is worth the risk, when we are able to push and deal with the repercussions. It's a little easier for those of us who have been suffering for at least a decade to be able to gauge all of these issues.

I feel the use of the statement, “to address these problems, and save lives” befuddles things, makes it seem as though ME/CFS is life-threatening and only serves to weaken our credibility as a group and as level-headed and rationally minded. Instead it makes us seem overly-dramatic with a propensity to spin things in our favor. That’s not to say that the impact on our lives isn’t severe. We just need to find the best wording to express how debilitating a lack of action or the wrong decision can be and is for us. Something commensurate with living with the full array of symptoms which elicit sympathy and garner billions of dollars in funding for being terminal illnesses, only in our case the symptoms are even more debilitating and we are sentenced to live with them for the rest of our lives without any relief, support or understanding.

I do not support the use of ONLY ME vs ME/CFS. I’m greatly concerned by the way in which people continue to want to narrow down the scope of who falls under the umbrella of ME vs CFS. The use of the nomenclature ME only in this case does a great disservice to the public and it doesn't help clarify, since it's not as though there's some central medical information network which publishes broadcasts and updates for everyone in the field of medicine even to know the distinctions which we might feel are important. It only serves to restrict the number of patients who ARE suffering who STILL need help and IF any sort of hope is delivered from all of these efforts, then they will be excluded by bureaucrats, number crunchers and anyone who is the sort of opportunist who uses this sort of exclusionary data to keep them from receiving any of the support they also so desperately need. The logic being used to exclude people seems to be that others will fall under some other umbrella illness, but the fact remains that they are STILL being labeled with CFS and they are STILL not being treated or helped any more than anyone else with a broad range of debilitating symptoms. They shouldn’t be made to suffer further merely because of a label and/or because they haven’t been able to exhaustively search for the physician who might be able to help.

I’ve been dealing with my ME for 20 years and the government and my physicians are largely responsible for adding years of setback to my illness. I can’t even imagine if I were suffering from CFS related to Gulf War Syndrome how that would add to my emotional suffering and then in turn exacerbate my physical pain, that would increase my exhaustion and they would all play into one another. (And I’m even hesitant to use the Gulf War Syndrome associated case as an example because I expect people to start making excuses that those people should be able to find and receive assistance elsewhere and that it’s clearly associated with a psychosomatic condition – which it’s not so clear and they aren’t receiving help, but regardless there are many, many other people who don’t fit into a specific umbrella but they also don’t fit the same criteria we who have ME have come to understand and KNOW about our condition and unfortunately at times end up feeling a bit defensive and even competitive about even though that’s not the intent and we DO feel sympathetic it’s just that we want to be understood as well.) However, we can’t be responsible for turning our backs on others who ARE living with a lot of the SAME symptoms and with what very well could be the same condition with the difference being only how it affects the person or how severely it has taken hold or manifested just because we are feeling particular and/or stingy.

The classifications of these differences CAN be made in the research, they DO NOT need to be made when it comes to initial funding. There are derivatives of other illnesses, such as Lymphoma, and once they are able to gain more funding and publicity then they can split off into their own line item. Until then, we could use the assistance from everyone affected in generating an outreach.

Also, I'm so wary of the academic center, pharmaceutical and biotech company research even though I understand that is where most of the research takes place and that is currently the best way to ensure that any research actually occurs. I feel that resources would be much better spent and there would be a much better chance of being able to produce more accurate and helpful results if we were able to work on alternative methods of research and lobby for ways to support them. I fully understand the enormity of that task however as the government is quite the illogical and bull-headed beast. I'm hyper-critical of modern research in general, but I don't want that to sound as though I don't believe in it at all. I just feel as though it's become so unscientific and instead has become more about proving a hypothesis and making money that modern research can't even properly admit how flawed it is. For example, if you look closely at any study done you'll notice how in the careful selection of a research pool the controls and flaws are removed.

Much of these thoughts are common throughout this document. Some of my comments are not in direct response to the written statements of the protest demands but rather in response to the demands inclusive of the referenced documents and I'm not saying not to make the demands, I am saying that most often "the others" (government, random physicians, insurance companies, medical facilities, etc.) are not on our side and it takes quite a bit of energy and advocating just to protect ourselves, be sure what is best for us is being done and know that we're not being seen as paranoid, uncooperative, ...everything but good little patients so it’s imperative that we think about things as wholly as possible and consider how each of these demands can affect someone in situations which differ from our own. We tend to take for granted that not everyone experiences things the same way we do or has had the same opportunities we have. We need to remember that just because something is apparent to us it is not so for others, even things we may feel are obvious. So again, it’s imperative that we try very hard to think about the different situations of the rest of the ME/CFS patients of whom we are not so familiar with to do our best to be sure they are also covered and cared for.

As an example, I'm concerned about the ME/CFS studies which make mention of a viral component as a pre-requisite for patient selection criteria as it appears that those who are focused on the research goal are focusing on patients who most definitely have a viral component to their illness. In my opinion that's short-sighted and what the research might end up studying is only patients who have a co-morbid illness. Furthermore, our chemical make-up does not remain unchanged once we undergo an extended course of pharmaceuticals. Each time we attempt to cure our illnesses with different medications for an extended period of time we are complicating our body chemistry and making it more difficult to straighten out.


I urge you to re-word "losing their lives" as I further explained in Section 1.

The statement, "in the following manner" isn't followed up by a clear and decisive enough direction. I feel as though this statement should either be removed or used only if there is a definitive plan in place which MUST be adhered to.

Again, I don't support the use of ONLY "ME" anywhere in the language as it is exclusive and can lead to bureaucratic red tape, especially since there isn't even an agreed upon set of criteria for what constitutes ME or even CFS. This is NOT the time to try to make any sort of statement about findings or research, this is ONLY the time to secure assistance.

I'd revise the word "partner" to "collaborate". There are issues of control and oversight and it's difficult, at best, to get any organization, much less a government organization, to partner with another. Bureaucracy and ego.

Ampligen, Rituxan, other antiviral medications, as well as any other pharmaceuticals which have been successfully used to treat ME/CFS patients should be strongly considered for accelerated trails for FDA approval.

The clinical trials must be all-inclusive of patients from the full range of the functional capacity scale, including severely ill, bedbound, homebound patients, as well as patients who are capable of exercise and work and patients at intervals in between these extremes. Clinical trails must be overseen by an advisory team of ME/CFS specialists and researchers who best know the needs of this patient population.

My current PCP even has no clue about how CFS affects me, what sort of things are appropriate/inappropriate as far as not only my treatment but also my day-to-day living. It has taken me many years to learn what factors exacerbate my condition, what helps and I still have to fight my physicians tooth and nail for what is best for me.

Even when I provide them with scientific articles, other than those written by ME/CFS experts since I am just now learning of those, they still are reticent to support me in helping provide the lowest stress environment where I'm able to get the amount of rest and sleep my body needs, make sure I'm not put through dangerously stressful situations where my sleep is disrupted. Instead, my pain levels are significantly increased, my emotional stress shot through the roof and my physical limits are pushed past my limits.


I can't think right now, but I think there should be some stronger language and suggestion about distributing information, guidelines and training materials associated with ME/CFS. I'm not familiar with how the continuing education process works in the medical field, but perhaps there's some sort of pipeline, process or even advertising facility which could be tasked with creating some educational materials to be disseminated to the medical community via the CDC, the HHS or both, whomever is responsible.


"as patients are losing their lives to this disease" IN THAT "many having spent years, even decades, too weak to function."

Suggest one change, substitute "shall" for "must" in second sentence just for redundancy sake. "Finally, to ensure we make fast progress in the context of the NIH’s organizational structure, ME/CFS must be assigned to an NIH Institute right away. Given ME’s clear neurological dysfunction, the disease SHALL be placed in the National Institute of Neurological Disorders and Stroke (NINDS) as recommended by CFSAC."
I agree that we should be able to debate the HHS demands publically. I think its great we are organizing and protesting. I feel the NIH is open to helping us out, and I appreciate that, but it going to take NIH a long time before they have any significant research results. I don't think the CDC will make major changes until they see NIH's significant research results. So we seem in a phase where we need to keep making noise, so HHS doesn't forget we are here (which is important), but I think its going to be atleast a decade before we see important gains.

While we keep pushing for HHS movement, at the same time we need to be asking ourselves how we can best help the severely ill today and over the next decade. To reach this goal, we need to assume we will get little to no goverment help. We need to be creative and resourceful and stop 100% relying on HHS to fix our short term problems. HHS is dysfunctional, and slow, and we are a low priority on their 'take immediate action' list.