eric_s
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A good development. Looks like we are moving in the right direction, even though there's of course still a long way to go.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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One of the real ironies of this disease is that as the disease progresses you become more acutely aware of real risks of significant disability and pathology (I am accumulating a very impressive and growing list of documented pathology - primarily CNS damage) while at the same time losing your already compromised level of physical capacity. Over just the last 12 months, I've watched a number of long time patients fade from these boards as their health deteriorates. To be frank, it scares the hell out of me to see this in myself.
Whoever is chosen, they need to have the courage to face the uncomfortable reality that this disease will take your life and it can lead to degeneration at a frightening pace as you pass certain tipping points. They will also need the fortitude to keep driving this message home, especially to those whom we have long viewed as CFS advocates. It is my very strong opinion that a significant obstacle to progress has been the reluctance of patients, families, advocates, medical professionals and governmental agencies to face the reality that ME/CFS patients do not recover with time (symptom fluctuation is not recovery); that they suffer severe and progressive disability, and that impact on mortality is completely unappreciated as no attempt has ever even been made to record those amongst us who have died from ME/CFS.
"To measure is to know." "If you can not (will not) measure it, you can not improve it." - Lord Kelvin
One of the real ironies of this disease is that as the disease progresses you become more acutely aware of real risks of significant disability and pathology (I am accumulating a very impressive and growing list of documented pathology - primarily CNS damage) while at the same time losing your already compromised level of physical capacity. Over just the last 12 months, I've watched a number of long time patients fade from these boards as their health deteriorates. To be frank, it scares the hell out of me to see this in myself.
Whoever is chosen, they need to have the courage to face the uncomfortable reality that this disease will take your life and it can lead to degeneration at a frightening pace as you pass certain tipping points.
"To measure is to know." "If you can not (will not) measure it, you can not improve it." - Lord Kelvin
What we need people on this steering committee to do, among other things, are:
(1) Pressure the NIH to fund the WPI.
(2) Pressure the NIH to endorse and fund carefully controlled clinical trials of pharmaceuticals for HMRV positive CFS patients.
(3) Demand that ME/CFS be recognized as a legitimate, severely disabling PHYSICAL disease - and NOT a psychosomatic one - by all government agencies in such a manner that insurance companies are obliged to treat it as such.
(4) Pressure the NIH to allocate adequate funds for research into the HMRV-CFS association that will use the same criteria used by the WPI/NCI studies, and also to greatly increase funds for other research examining the neurological, immunological, and other biomedical components of ME/CFS.
(5) Push for the formal recognition of the Canadian Consensus Criteria as the primary tool for ME/CFS diagnosis.
(6) Push for reform of the CFS research grant review process, and its removal from the Office of Women's Health.
(7) Advocate for an NIH or DHHS endorsed information/education campaign created by ME/CFS researchers, clinicians and advocates selected by the patient community directed at medical schools and clinicians throughout the country.
(8 ) Push for the proper recognition of the potential dangers of exercise therapy for ME/CFS patients and acknowledgment that the promotion of CBT and GET as treatments for CFS by the CDC and others lacks scientific validity.
(9) Advocate for the creation by the federal government of emergency relief programs (such as federally-funded assisted living housing) for CFS patients who cannot work and have been shut out of government support due to years of failure by government and private agencies to recognize the reality and severity of their disease.
(10) Express the anger of the patient community with the way ME/CFS has been handled by the government for decades now (including by Stephen Straus), insist upon a re-visiting of the historical definition of the disease, and demand that this disease be taken as seriously as AIDS or any cancer.
(11) Push for cooperation with the WPI in the actual design of the Lipkin study, the inclusion of control samples from the WPI in that study, the end of any (un-scientific) statements by officials that this study can be in any way definitive, and perhaps the official retraction of the statement to that effect made by Anthony Fauci.
(12) Convey to the NIH the degree to which patient anger and frustration is growing with government policy toward and lack of funding of 'CFS' (and the WPI), that this anger and the degree of activism patients and their families are willing to employ cannot be gauged by the discussions on public forums, that patients and their families are increasingly aware of the politics that are preventing adequate government response, and that therefore (this part reported politely but firmly) there will be consequences of continued failure by the NIH to effectively deal with these issues: to begin with, organized public protest targeting NIH officials, media outreach, and organized lobbying of representatives.
Cort,
Thanks for the great news and congratulations on being considered yourself.
I do appreciate the need to limit inclusion of patient representatives to those are well enough to handle a "significant workload."
One of the real ironies of this disease is that as the disease progresses you become more acutely aware of real risks of significant disability and pathology (I am accumulating a very impressive and growing list of documented pathology - primarily CNS damage) while at the same time losing your already compromised level of physical capacity. Over just the last 12 months, I've watched a number of long time patients fade from these boards as their health deteriorates. To be frank, it scares the hell out of me to see this in myself.
Whoever is chosen, they need to have the courage to face the uncomfortable reality that this disease will take your life and it can lead to degeneration at a frightening pace as you pass certain tipping points. They will also need the fortitude to keep driving this message home, especially to those whom we have long viewed as CFS advocates. It is my very strong opinion that a significant obstacle to progress has been the reluctance of patients, families, advocates, medical professionals and governmental agencies to face the reality that ME/CFS patients do not recover with time (symptom fluctuation is not recovery); that they suffer severe and progressive disability, and that impact on mortality is completely unappreciated as no attempt has ever even been made to record those amongst us who have died from ME/CFS.
"To measure is to know." "If you can not (will not) measure it, you can not improve it." - Lord Kelvin
I think there should be alternates or backups for each patient representative or that their term should be only a few months with plans for continuity to the next person.
This would help with the burnout/health ramifications like CBS mentioned.
Why not notify us patients of this BEFORE you turned in your list of recommendations? This is the first I heard about it, and I would have liked the chance to have input before your list was finalized. You can't cite unity ("Now is the time to unite.)" when you don't allow for input in a timely manner BEFORE the decisions are made. I'm very, very disappointed. It's really difficult to be disenfranchised by our government agencies, but it is even more disheartening when it comes from our "patient" organizations.
I suspect this will not be a popular view among some here, but I am strongly opposed to autism activists being so closely involved in ME/CFS issues, particularly at this formal advisory level. (Conversely, I also believe ME/CFS activists should not be on advisory panels for autism spectrum disorders.)XMRV Global Action on FB is apparently collecting names to submit. You can nominate at the link below. I don't know at this point if there is another site you could post to for those who aren't on FB. Below the announcement, I've posted some of the names being nominated.
One of the real ironies of this disease is that as the disease progresses you become more acutely aware of real risks of significant disability and pathology (I am accumulating a very impressive and growing list of documented pathology - primarily CNS damage) while at the same time losing your already compromised level of physical capacity. Over just the last 12 months, I've watched a number of long time patients fade from these boards as their health deteriorates. To be frank, it scares the hell out of me to see this in myself.
Whoever is chosen, they need to have the courage to face the uncomfortable reality that this disease will take your life and it can lead to degeneration at a frightening pace as you pass certain tipping points. They will also need the fortitude to keep driving this message home, especially to those whom we have long viewed as CFS advocates. It is my very strong opinion that a significant obstacle to progress has been the reluctance of patients, families, advocates, medical professionals and governmental agencies to face the reality that ME/CFS patients do not recover with time (symptom fluctuation is not recovery); that they suffer severe and progressive disability, and that impact on mortality is completely unappreciated as no attempt has ever even been made to record those amongst us who have died from ME/CFS.
Wonderful news that there will be patient representatives!Extremely important!! The most severe are not able to post and need to be included. The deaths that occur, that are not considered!!! Pleez go for us Cort
glen
Please, whoever represents us in the end, please don't forget those of us who do not fall into any definition, including the CCC. We are more prone not to get a diagnosis, or get relegated to the psychiatric dustbin as I was for years.
Meeting research versus clinical criteria: Table 1
provides all the symptoms as specified in the Revised
Canadian ME/CFS case definition. Some meet full
criteria whereas others who are very symptomatic do
not meet full criteria. We argue as we did with the
Pediatric case definition (Jason et al., 2006) that those
that meet full criteria are more homogenous and might
be best used for research purposes and we now classify
these individuals as meeting the Research ME/CFS
criteria. Still, others might have the illness but not meet
one of the required criteria. We classified such
individual as meeting Clinical ME/CFS criteria. These
individuals needed to have six or more months of
fatigue and needed to report symptoms in five out of the
six ME/CFS symptom categories (one of which has to
be post exertional malaise, as it is critical to this case
definition). In addition, for autonomic, neuroendocrine
and immune manifestations, adults must have at least
one symptom in any of these three categories, as
opposed to one symptom from two of the three
categories. We also have a category called Atypical
ME/CFS, which is defined as six or more months of
fatigue, but having two to four ME/CFS symptoms.
There is also a category called ME/CFS-Like, which
involves exhibiting all criteria categories but for a
duration of fewer than 6 months. Further, a person
could be classified as having ME/CFS in remission if
the person had previously been diagnosed with CFS by
a physician but was not currently meeting the Research
ME/CFS Criteria, Clinical ME/CFS criteria, or Atypical
ME/CFS criteria and must have 0 or 1 classic ME/CFS
symptoms.
Dennis Mangan - the leader of the NIH CFS Working has decided to include from 1-2 patient advocates
(...)
The Board of Phoenix Rising (myself, Adin Burroughs, Mark Berry, Pat Sonnett and Christina Gombar) will come up with our selections and, of course, we welcome input. I will be one of our nominees .
(...)
This is the first time to my knowledge that something like this has happened - it's another example of Dennis's willingness to engage the community and be transparent about what is going on. s
I will send him a link to this thread so he can check out the communities opinions.
Thanks, Wayne! I contacted Dr. Mangan a while back and suggested that discussion of the GD-MCB hypothesis be included in the Workshop. He replied that time would be tight, but he was sending my suggestion on to the steering committee, and it might be a possibility. Methylation treatments have shown good results in clinical testing, and they are running pretty high on the treatment rankings at CureTogether.com, so I think it would be worthwhile to include this hypothesis, even though there are no peer-reviewed journal papers on it yet. So, we'll see!
Thanks again for the vote of confidence!
Rich
Hi Rich,
When I thought of your being an excellent nominee, I was thinking beyond your expertise with the GD-MCB. I was also thinking of your ability to take a "global view" of CFS, something I feel is so important with such a complex syndrome.
For those who might be interested, I thought Rich made a remarkably insightful post about a week ago in which he discussed his global view of CFS, and how it differs from various CFS MDs and researchers. I thought it was so good, I e-mailed it to some friends. I'll provide a link here as well:
http://forums.aboutmecfs.org/showth...by-arterial-spin-labeling&p=146318#post146318
Again Rich, I would love to see you advocating for us at the NIH level. I think you could bring much to the table. Besides your indefatigable dedication to the ME/CFS community, I think you have some diplomatic skills that could really make a difference.
Wayne
Why not use a poll? This is a site built around a message board after all. Why not let people nominate whom they want and then conduct a poll of members--I think this would be the most democratic way to proceed. If the board is of the opinion this entire process would be too lengthy... why not just have the board select "Candidates" and let members vote in a poll on those candidates?
I'm not suggesting this because it would result in a better list--though it might. But it seems to me that having the board select people on a site built around a forum and blogs is using a very "top-down" management style when a "bottom-up" style would arguably be just as practical and effective. Furthermore a "bottom-style" has the effect of empowering the community at large much more than a top-down strategy can achieve.
Just my opinion. I'm not saying that this process can't, or shouldn't be managed to give more weight to senior members, and to senior senior members such as Cort who founded this site, but surely something like a poll of candidates is more in keeping with the democratic expression of views and philosophies that a message-board and a "knowledge clearinghouse" should embody.