Article: The Phoenix Rising Board Letter to CDC CFS Research Chief Unger

Article: Phoenix Rising: Letter to Dr. Unger

You can view the page at http://forums.phoenixrising.me/content.php?412-Phoenix-Rising-Letter-to-Dr.-Unger

 

answering in a new thread

this is a side track for this thread, but I would love to hear more about how this works in another thread. (How does CBT produce ostensible organization? How did "evidence-based" come to be code for CBT? Is that a tacit admission that prozac is not evidence-based? Or just that ink spots and Freud are not?)

WillowJ, responding in another thread is a good idea. I will reply in alternative therapies under the title, why is CBT/GET "evidence-based?"

 

Let me first say I don't have much mental clarity this morning to put my perspective into one that was tactful, so my post is a bit dry but might have a few valid good points if you can get the gist of what I am trying to say.

The Phoenix Rising Letter to Dr. Unger

First we at Phoenix Rising want to congratulate Dr. Unger on your recent appointment as Acting Chief of the Chronic Viral Diseases Branch at the .CDC. We realize that you assume this position during very challenging times when relations with the ME/CFS patient community are at an all-time low and trust and respect for the CDC is almost non-existent. We firmly believe, however, that we are also at a crossroads and you have been given a unique opportunity to rebuild that trust by bringing fresh perspectives and creating open communication within the ME/CFS scientific, professional and patient communities. We fully support you in that endeavor.

Agree. trust is non-existant for the CDC

Name - We request that the CDC recognize that CFS or ME/CFS is a worldwide disorder; that CFS is referred to as ME or ME/CFS in many countries outside the United States, and that several major organizations inside the US, including the IACFS/ME and NIH, now refer to CFS as ME/CFS. We request that the CDC put CFS in its proper geographical and historical context by referring to it as ME/CFS.

I would suggest changing this to. The CDC needs to apologize for for obfuscating the true nature of ME for decades. The CDC also needs to apologize confusing ME with being some psychological illness while aiding big pharma in screwing the public out of disability benefits. More importantly, the CDC should apologize for screwing patients out of years of potentially scientific breakthrus in the years the CDC has proven to creating bogus science that is designed to confuse and deny.

Definition - We request that you abandon the Empirical Research Definition and utilize the expertise of the ME/CFS research communty to create the criteria for a new definition. We also request that you attempt to resolve the substantial gulf between the CDCs interpretation of CFS and the interpretation of a substantial part of the ME/CFS research community, by investigating the effectiveness of using post-exertional relapse (post-exertional malaise) to differentiate chronic fatigue syndrome from other disorders.

I would suggest something more like. PLease completely delete all past research relating to CFS to some kind of Psychological disease. Begin properly educating people on the true nature of the disease, which the CDC KNOWS BETTER THAN ANYBODY ON THIS PLANET.

Collaborate - The key recommendation from the CFSAC, IACFS/ME and CFIDS Associaton of America, at the public hearing regarding the 5 year strategic draft plan, was that the CDC collaborate more. We recommend that you work with the ME/CFS research community to identify and fill gaps in research. We request that you investigate the possibility of being part of a coherent International ME/CFS research effort that utilizes standardized protocols, identifies research opportunities, provides expertise across institutional boundaries and shares data and samples. We request that you become a partner with and actively support the CFIDS Association Research Network and the Whittemore Peterson Institute Biobank.

This should be the CDC needs to STOP conspiring with Big Pharma, and faux advocacy organizations like the CAA, And Start removing roadblocks for the WPI and other well meaning researchers like Dr. Kenneth Friedman.

Communicate - The CDC-funded media and physician education campaigns were designed to alter the publics perception of ME/CFS but ignored the CDCs disastrous relations with its core constituency - the patients. We assert that regular communication with the patient community would allow both the CDCs and the patient communitys needs and aspirations to be evaluated in a more neutral light - creating the opportunity for discussion and movement rather than the friction that currently characterizes the relationship. We request that you participate in regular meetings with members of the patient community.

This should probably read. Stop communicating through SPIN organizations.

Be a Real Leader - The CDC is a leader in the ME/CFS field in terms of resources but became known for its lack of interest in the work of outside researchers. We request that you build on your recognition that ME/CFS is a complex disease by becoming a place where the insights of researchers can be heard and expanded upon. We request that you interact regularly with IACFS/ME, CFIDS Association and WPI researchers in order to stay current in this complex field. We suggest that you demonstrate flexibility and innovation by using small seed grants to support outside efforts that might produce advances in the field.

The CDC can't be a real leader until it recognizes and addresses all the crimes of the CDC, and changes leadership to an outsider that isn't subject to the same flawed policies of the past.

Create a New and Realistic Strategic Plan that is Accountable Financially - The CFIDS Association uncovered information indicating that some CDC studies had astonishingly high costs and that the program lacked financial accountability. The CDC then produced a strategic plan that was wildly optimistic and lacked any financial controls. We request that you create a new strategic plan that accurately reflects the resources available to you and identify core reasons why the CFS program at the CDC is not afforded the resources usually available for disorders of its magnitude. Then lay out a plan designed to address those reasons and request the funding necessary to carry it out.

Start outsourcing research to outside researchers with intentions of finding effective and affordable treatments now.

CDC Physician Toolkit - We request that the CDC start over on its physician toolkit. Since evidence based information on treatment in ME/CFS is scanty and concerns mostly behavioral therapies we believe the most effective provider education program will rely extensively on the expertise of practicing physicians. We request, therefore, that the CDC convene a meeting of notable CFS physicians to get a consensus on suitable therapies and have those findings form the core of a new CFS Physician Toolkit.

This could be good if overseen by a panel of patient supported physicians.

Incorporate Physical Stressors into Research Studies - We suggest that a disruption in homeostasis is a key component in ME/CFS and request that the CDC require all future research studies to incorporate a physical stressor into their protocols, and that the CDC work with other groups to elucidate standard stress tests to be used in ME/CFS research studies. Furthermore we request that the CDC investigate PEM in CFS and other disorders using large-scale studies involving exercise testing, immune, metabolic, endocrine and other tests and symptom assessment.

All future research should have the primary goal of finding the root cause of ME, and finding affordable treatments that can relieve symptoms now or lead to remission. Treatments should not necessariliy have a profit motive or be developed by standard big Pharma. I suggest a team of people such as Rich Van K(methylation), Burt Berkson(alpha lipoic Acid), Boyd Haley(OSR#1), and others that have found ways to enhance bodies own immune system to suppress viruses and bacteria.

Allied Disorders Conference - A number of mysterious painful, fatiguing and cognitively impairing disorders have been elucidated over the past several decades including ME/CFS, Fibromyalgia, Irritable Bowel Syndrome, TMD, Interstitial cystitis, pelvic inflammatory disorder, etc.. Other disorders and conditions that have subsets of severely fatigued patients include multiple sclerosis, biiliary cirrhosis and post-cancer patients. More subsets will likely be discovered (ie post ICU patients). We request that the CDC, in collaboration with the NIH and other organizations, produce a annual conference designed to elucidate commonalities and differences between these disorders and which will enhance collaboration between researchers in the respective fields.

Sounds good.

Deepening the Female Contribution to this Disorder - CDC has begun to investigate reasons why ME/CFS occurs prominently amongst females - research that is long overdue. We note that several female idiopathic fatigue and pain-producing disorders are dominated by women - all of which receive poor funding. We assert that further CDC studies explicating the reasons for the gender difference in this disorder may be able not only to explicate important factors in ME/CFS but in other allied disorders as well.

no comment

Keep Your Word As An Organization - An organization without integrity is an organization without a rudder yet the CDC has made several promises over the past few years which it has not kept. We request that the CDC be a place that keeps its word and is accountable for its word. If the CDC, for instance, makes a promise to produce two conferences in the next year then it should either keep its promise or acknowledge that it will not keep its promise, explain why, and remake that promise, if appropriate.

Start by apologizing for past actions, and show good intent by focusing on whatever leads to 1. effective treatments. 2 getting at root cause 3) accurate and effective diagnosis. In that order, with no distractions, unless it leads to the above 3 mission critical goals.

My two Cents.

Markmc2000

 

Cort,

When you told us about the new Coalition 4 ME/CFS, I was so excited because I believe that pooling all our resources together and speaking with one voice is the ONLY way to achieve any change.
The sum is greater than our parts put together because there is a tremendous advantage in numbers.
It's like the difference between a March of a million or a March of ten


The Coalition 4 ME/CFS includes
Chronic Fatigue Syndrome/ Fibromyalgia Organization of Georgia, Inc.,
CFS Knowledge Center,
CFS Solutions of West Michigan,
PANDORA, Inc. (Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research & Advocacy, Inc.),
Phoenix Rising,
Rocky Mountain CFS/ME & FM Association (RMCFA)
Wisconsin ME/CFS Association, Inc,.
Vermont CFIDS Association, Inc.

I think that we should have just signed the PANDORA letter with them.
The two differences that you mention does not warrant a break away from them.
It doesn't warrant a seperate letter from phoenix rising to Dr. Unger.
It will just confuse the matter further for her.
One strong letter from the Coalition would have made so much more sense.

 

Why would you want to get away from studying victims of ME/CFS outbreaks. They are probably one of the best ways to make sure you are studying a tight cohort of ME patients?
Post exertional Malaise has it'sown defintion issues. How do you define PEM . What cutoff points, measurements and perhaps biological measurements are to be used.
Any out of shape person with depression can state they have PEM after exercise when questioned. Why no mention of the cognitive symptoms which are just as much of a hallmark as the PEM symptoms?
I do not believe Incline Village was a heterogeneos group. THey were showing having brain scans with high intensitiy punctate lesions showing up and reactivated EBV. SAying they are heterogeneous is like saying AIDS patients are heterogeneous because all there symptoms and actived infections are not the same when it is obvious they have the same illness when you look at the whole picture of their health.
What this illness desperately needs are some real impartial epidemiologists to start from scratch and go back and study these outbreaks and the family members of people in these outbreaks and see what the heck happened and is continuing to happen as far as the infectiousnes of this disease.
The family survey on this site seems to demonstrate how transmittable this disease possibly is and somehow the CDC has managed to ignore this issue for 30 years.

If you look at the original paper you find they contained gradual and acute onset patients. While there were the MRI results - they weren't found in everybody and they were often found in different areas of the brain in different people. After more research, using the technology they had then, more of them had reactivated EBV than controls but, as I remember, a good number of controls also had reactivated EBV.

A study was done I believe of people with HHV6 activation (stretching way back here - hope I get this right) from that area - which found a surprising amount of recovery...which was really weird..although it may be like the Dubbo studies that most people do recover within a couple of years and its the rest of us that linger on for some reason. Or maybe the definition of recovery is not very good.

In any case, we felt there are too many people who do not appear to get triggered by outbreaks (that they can see) for that to be a key focus.

I agree that it is way past time for family surveys - and the one we took her and that Dr. Deckoff Jones is doing is quite illuminating. We also missed the cognitive component...I agree.

 

I like this Cort, but there are a couple things I don't understand.

1- You mention creating a new definition for CFS/ME--Why not emphasize using the Canandian Criteria?

2- What are the specific "physical stressors" you are talking about?

3- With such little research money put into pysiological causes of CFS/ME, can you be sure that it is a "homeostasis" problem (or is that a symptom and not the specific cause)?

4- Why don't you mention XMRV? I understand that there are many people with CFS who tested negative for XMRV or may not have XMRV, but isn't it still important that we get more research time and money invested in XMRV? Shouldn't we work on ending the contamination controversy and get the answers for the patients that are XMRV positive and could have CFS/ME due to XMRV?

5- I personally think the number one issue should be more research money spent on physiological studies and there is no way to over emphasize this point, even if it has to be said more than once in a letter. (Which you did, but perhaps it should have been first in all caps or some such thing.)

6- One more question--Who is this letter suppossed to represent? Does it represent the opinions of you, the moderators and the administrators of Phoenix Rising only? Is Ms. Unger aware that many members of this forum did not see this letter until now and it does not necessarily represent the view point of all of us? I think it might be a good idea to mention this to her. I see now where you said it represents the board of PR only. Can you please make sure Ms. Unger knows that is the case?

Why not emphasize the Canadian Criteria. We didn't overtly mention the Canadian Criteria because, I at least, don't believe the CDC will simply move over to that. I think the only they will do that is to do research on the key feature of CC - post-exertional malaise. That section was an attempt to get them to document in studies, that feature - and then come up with a CCC definition or it use that definition. Essentially we were trying to get the CC definition which we support completely in there.

Homeostasis - I think we can guess that the problem does involve homeostasis, which is really a broad term, but we certainly don't know what's causing it; ie it could very well be a pathogen..or it could be a series of breakdowns caused by something else. So, no there is no sense that this disorder is caused by 'homeostasis' and we wouldn't want to conclude that.

Physical Stressors - can involve alot of things actually, Exercise is the obvious one and there's Tilt table testing, but there are also drugs that researchers give to put systems like the HPA axis or the autonomic nervous system under stress. These studies tend to have more significant results We should also mental stressors like doing mental tasks in fMRI's.

XMRV - I think we kind of felt that the CDC has played its role in XMRV and is part of a series of studies lined up (BWG, Lipkin) which will probably tell the tale - so we wanted to focus on other areas that get less funding or attention.

More research into pathophysiology - I and I'm sure, the board, completely agrees that more research into pathophysiology is our main request. I'll see if we can tweak that.

Board - we will make clear that this letter was developed by the Board and is not a product of the participants in the Forum (altho we will make adjustments to it)

 

Cort,

When you told us about the new Coalition 4 ME/CFS, I was so excited because I believe that pooling all our resources together and speaking with one voice is the ONLY way to achieve any change.
The sum is greater than our parts put together because there is a tremendous advantage in numbers.
It's like the difference between a March of a million or a March of ten


The Coalition 4 ME/CFS includes
Chronic Fatigue Syndrome/ Fibromyalgia Organization of Georgia, Inc.,
CFS Knowledge Center,
CFS Solutions of West Michigan,
PANDORA, Inc. (Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research & Advocacy, Inc.),
Phoenix Rising,
Rocky Mountain CFS/ME & FM Association (RMCFA)
Wisconsin ME/CFS Association, Inc,.
Vermont CFIDS Association, Inc.

I think that we should have just signed the PANDORA letter with them.
The two differences that you mention does not warrant a break away from them.
It doesn't warrant a seperate letter from phoenix rising to Dr. Unger.
It will just confuse the matter further for her.
One strong letter from the Coalition would have made so much more sense.

Thanks Nielk - all I can say is that I get your points and we had a big discussion about this and in the end that's how the Board voted. I think it could have gone either way but in the end that's the way it went. Your concerns were certainly thought and we'll see how it goes the next time.

 

Where are the members of the board listed?

 

I think a letter like this to Elizabeth Unger has value, however I have the following concerns:

1.) Who are the board members of PR? Where is information about them available on the PR website?

2.) You need to explicitly state that this reflects the opinion of the board members of PR. Phoenix Rising itself has become a 1000+ strong community and there is nothing to indicate that this letter reflects the views of the community.

3.) Why encourage the use of "ME/CFS?" My understanding -- and why I supported it -- was that it was meant to be a transitional name only. If there is any organization that can transition us from the universally despised "CFS" to something far more appropriate, it is CDC. To borrow your own phrasing, CDC should "utilize the expertise of the ME/CFS research communty to" find/decide upon a new name that better reflects our best understanding of the pathology of this illness. And not just the CDC's current understanding, but the scientific consensus as a whole. And yes, pointing out that they have done precious little to move us toward a scientific consensus, that the fact we are more than a quarter of a century into this disease without any real scientific consensus, seems entirely appropriate.

4.) SUBGROUP! SUBGROUP! SUBGROUP! If I was allowed to ask Unger or even Reeves only one question, it would be why the hell it has not subgrouped this illness when even its own scientists and research have insisted this is absolutely key to understanding this disease (e.g. Fukuda et. al). I realize you talk about subgroups here and there but this really among the most important - and quite possibly among the simplest - things they could have done/should be doing and haven't/aren't. How do we know that outbreaks are sporadic? They may well be but without subgrouping (and doing other basic epidemiological work) we can't know for sure. The refusal of the CFS group at the CDC to do this one basic thing, along with its financial improprieties, is nothing short of malfeasance - though I can appreciate why you might refrain from using that last bit of phrasing. However, subgrouping should be it's among it's top priorities.

5.) For the love of God, Buddha, Jesus, Mohammad and all that is caring and compassionate, CHANGE/TAKE DOWN THAT DAMN TREATMENT SECTION on their website (I believe it's separate from the toolkit, but if I start looking stuff up, I'll be here for the next five hours). While professional counseling has its place in helping patients cope and learn to pace, listing it as the number one treatment option is insulting in the extreme as -- whether intentionally or not (though my money is on the intentional) -- it tells anybody who visits that page that ME/CFS is an illness of psychogenic origin. There is no real scientific consensus on how to treat ME/CFS -- I get that. However there is a fairly standard protocol on how to treat symptoms. And everybody outside of the CDC (okay, and NICE, etc.) recognizes that certain SUBGROUPS do respond to certain medications. The day of "well it doesn't help/define everybody" has got to end.

6.) I think the NIH is -- for the moment -- doing a good job of leading and if Dennis Madigan continues as he is, I'm happy to see them continue to lead as opposed to CDC, who, by the nature of their organizational mandate, is going to be limited in its ability to lead if ME/CFS turns out not to be communicable.

7.) I understand differences of opinions - we all have our own unique take on the world - but while this letter does have its strengths (I think concerns about the state of ME/CFS "evidence-based medicine," for instance, are well-founded),

I don't see why you couldn't just sign the PANDORA letter and follow it up with an addendum clarifying your position(s). My initial gut reaction when I read this letter with its bit at the end about PANDORA's letter was that it was petty. Or at the very least, it was undiplomatic to refuse to sign it and then send your own that points out its flaws. It felt like you were splitting hairs amidst so much upon which you actually agree (yes, I do see the irony in my whining about that while pointing out the - subtle - flaws I see in the letter you've just posted !).

I think PANDORA's intransigence about its inability to make any changes to its letter was unfortunate, and I totally get your discomfort with some of its language. Yet at a time when there is so much division in our community, so much back-biting, so much hair splitting about every little bit of language (not that there isn't a time and place for that) that it just seems stating "oh right, addendum - study outbreaks, comparing it with the information we already have - and will continue to get - on gradual onset ME/CFS and physician ed programs should be put together by practicing clinicians, include evidence from all sources, and where evidence is lacking but shows merit for better diagnosing and treating ME/CFS, fund studies to clarify it" would have been far easier, shown more tact, and saved what is sure to be yet another round of this organization snubbed that.

Sorry, this is just the first time I've felt well enough to vent about anything ME/CFS related in awhile - and again, irony with regard to my last comment already noted.

Yes there is info on them on the website but honestly the website - whch has been detached from the blog - and which I have trouble finding and parts of which look horrible right now, for some reason - is a problem. I tried to search for that info on the internet and couldn't bring up the page. (We're in a transition period ).

The Board members are Adin Burroughs, Mark Berry (both moderators/admins on the Forum), Pat Sonnett (Miami-Coral Gables Support Group) and Christina Gombar (writer). All have ME/CFS; Mark, myself and Christina are working 'part-time'.

We all agree that ME/CFS name is transitional - hopefully briefly transitional.

We agree that the toolkit is really, really, really poor and we tried to outline a way to ensure that that would not happen again; ie by using ME/CFS experts. We should request that they replace it with a new one put together by ME/CFS experts. Good idea.

Sign the Pandora Letter and Provide an Addendum - that was discussed as well and it just didn't make it. I do get the real need for organizations to work together and to make that the focus rather than getting everything completely right. Thanks for your inputs. In order to slay Goliath all these little Davids really do need to band together. Good point.

 

Folks, having only had time to briefly scan through the questions raised in this thread, and being very pressed for time, I'll just say now that I'm a board member of Phoenix Rising and that these questions and concerns are recognised and are being addressed. There is a lot of work to be done...

I don't want to make excuses, but I think that the timing of the decisions we made about this letter was unfortunate for us, because we were in the process of transitioning to becoming a non-profit organisation when certain decisions had to be made, and the deadlines we were obliged to work to on this issue, at a time when we were tackling a lot of other issues as well, were just too tight for us all to deal with in an ideal way. I don't believe this was anybody's fault, it was just the situation we were all in.

Sorry I don't have time to answer all your questions just at the moment, but I want to assure you all that we do take them on board and we are working very hard to improve the way we do things.

Thanks for bearing with us...

Mark

 

standing O for michelle!

markmc, really good points. you're correct that this is the only way to really prove the CDC is dedicated to change and win our trust. it isn't exactly diplomacy, tho. it is exactly what I would love to see Congress and the White House insist upon. I do consider what you said to be an eminently just outcome. and besides helping us, it would improve the state of all "MUS" because then the medical field would fear doing something like this again--which is precisely as it should be.

 

standing O for michelle!

markmc, really good points. you're correct that this is the only way to really prove the CDC is dedicated to change and win our trust. it isn't exactly diplomacy, tho. it is exactly what I would love to see Congress and the White House insist upon. I do consider what you said to be an eminently just outcome. and besides helping us, it would improve the state of all "MUS" because then the medical field would fear doing something like this again--which is precisely as it should be.

I have changed the title and the interior of the letter to emphasize that the Board of Phoenix Rising put the letter together and not the Forum participants. In retrospect I can see how weird it must have looked and I apologize for that mixup and appreciate everyone's comments who brought that to light.

 

Dear Cort, the type on your front page articles seems to be teeny tiny lately. I have to blow it up many times to read the articles. Could you please use bigger type?
Thanks,
Forebearance

 

I have changed the title and the interior of the letter to emphasize that the Board of Phoenix Rising put the letter together and not the Forum participants. In retrospect I can see how weird it must have looked and I apologize for that mixup and appreciate everyone's comments who brought that to light.

sorry, I should have clarified... (saying it's from the board is a good idea because there are a few points not representative of the PR community), but the standing O was for the points 4, 5, and 6: Subgroup, revise that horrible treatment section (a separate topic from toolkit), and let Dr. Mangan take the lead instead of CDC (even though this Disease does seem to be communicable at some point, which is not exactly what Michelle said).

 

If you look at the original paper you find they contained gradual and acute onset patients. While there were the MRI results - they weren't found in everybody and they were often found in different areas of the brain in different people. After more research, using the technology they had then, more of them had reactivated EBV than controls but, as I remember, a good number of controls also had reactivated EBV.

A study was done I believe of people with HHV6 activation (stretching way back here - hope I get this right) from that area - which found a surprising amount of recovery...which was really weird..although it may be like the Dubbo studies that most people do recover within a couple of years and its the rest of us that linger on for some reason. Or maybe the definition of recovery is not very good.

In any case, we felt there are too many people who do not appear to get triggered by outbreaks (that they can see) for that to be a key focus.

I agree that it is way past time for family surveys - and the one we took her and that Dr. Deckoff Jones is doing is quite illuminating. We also missed the cognitive component...I agree.

Interesting observation about the punctate brain lesions in ME/CFS. They do occur in asymptomatic people. Unfortunately, the thumb-nail-sized lesions that appear in ventricular areas of the brain in MS patients also show up in asymptomatic subjects as well. But in correlation with "comorbid" symptoms, they are very important in the diagnostic process. There is complexity, confusion, and unexplained variation in most neurological illnesses. It seems, therefore, anatomical observations are valuable, but not perfect.

After twenty years plus of watching the studies coming and going, waxing and waning, it seems unlikely that ME/CFS actually caused by a single organism or infection. More likely, it is the body inflicting a mild traumatic brain injury on itself. Followed by the cascade of physical and pyschological associated with deep brain malfunction. Cort's intuition that "outbreaks" may be of sideline interest, but are not the main cause of the disease, is probably correct. I would add that the genetic component (for true ME/CFS) will probably turn out to be a big factor.

Cort's call for special consideration for female problems vis-a-vis ME/CFS is spot on. After having been married to one for many years, my opinion is: pity the poor women. Have you ever talked to a poor gal who has gone to a gynecologist with one of myriad reproductive organ-related issues? They usually are faced with two treatments: go on the pill or get a hysterectomy. There is also the medievel treatment for endometriosis of flushing the uterus with boiling water (yes, it is true). Their range of treatments is very primitive. More attention is due.

 

Eventually, I think we will have to break into different groups to determine to real conduct good research that leads to causes and treatments (may I dare say cures?). I don't think you have to get ME/CFS in an outbreak for it to be infectious. There is an unusual amount of health care workers, teachers and flight attendants afflicted. All of these are exposed to more germs than the normal person. Some to more vaccinations also.

Maybe it is time to distinguish ME from CFS?

 

Eventually, I think we will have to break into different groups to determine to real conduct good research that leads to causes and treatments (may I dare say cures?). I don't think you have to get ME/CFS in an outbreak for it to be infectious. There is an unusual amount of health care workers, teachers and flight attendants afflicted. All of these are exposed to more germs than the normal person. Some to more vaccinations also.

Maybe it is time to distinguish ME from CFS?

I am not sure that attempting to distinguish ME from CFS will work because the two are already associated. I think the only way XMRV positives will get what they need will be to create a separate association for retroviruses only (other than HIV). As long as they still call the disease associated with XMRV Chronic Fatigue Syndrome or Myalgic Encephalitis, those people will be lumped in with all the other groups of people (cohorts) diagnosed with CFS. Research monies will have to be split up and there will be conflict between all the different groups of people who have been diagnosed with CFS or ME. Further, scientists will still be looking for guidance from the CAA regarding XMRV.

To avoid all the confusion, to get the research money for XMRV, and to get the treatment XMRV positives need, a retrovirus association should be started and the disease associated with XMRV should be named something else, such as Xand disease. Perhaps to get the monies needed for research this association could include HTLV-1 & 2 and parvovirus.

 

MishMash

Cort's call for special consideration for female problems vis-a-vis ME/CFS is spot on. After having been married to one for many years, my opinion is: pity the poor women. Have you ever talked to a poor gal who has gone to a gynecologist with one of myriad reproductive organ-related issues? They usually are faced with two treatments: go on the pill or get a hysterectomy. There is also the medievel treatment for endometriosis of flushing the uterus with boiling water (yes, it is true). Their range of treatments is very primitive. More attention is due.

MishMash, I am sorry to hear about your wife's treatment, but I think if you talk to me/cfs males they will tell of similar experiences. Apart from the flushing business. I have a myriad of sexual organ-related issues, (including agonizingly painful testes, bladder pain, ejaculation pain, ejaculation without climaxing, failure to climax, reduced urine flow, leakage, increased frequency of urination) and no viable treatments... I believe some cfs males have even worse problems. Apart from my abject fear about going to a doctor in the first place (yeh male stereotyping), the usual response is to check for prostate cancer, then to treat me as a hysterical cfs patient (deliberate use of the word hysterical here to show that the doctors are not just labelling women as hysterical).

What I find really interesting is PR's (board) focus on a relatively niche issue (no intended slight to fibro or endo sufferers), while leaving out mention of HGRV's - seems to be a case of 'Nothing in this hand, oop's nothing in that hand either'.

I also note that a focus on women and pain has crept into the language PR (board) is using, at the same time as the CAA has decided to focus their attention on these issues. This contributes to suggestions of alignment of agendas between the PR (board) and CAA, which may not be in the interests of forum members. It is a pity that such agendas are not fully discussed in an open manner.

I still don't get the letter, even with the concessions (forced). As simply a missive from four or five people who do not represent the views of anyone, why is it being held aloft as a 'Peace in our time' contribution to Pandora's earlier efforts.

 

@MishMash
What I find really interesting is PR's (board) focus on a relatively niche issue (no intended slight to fibro or endo sufferers), while leaving out mention of HGRV's - seems to be a case of 'Nothing in this hand, oop's nothing in that hand either'.

Looking at why women are affected more frequently will lead to looking at autoimmunity and there is a lot of literature about retroviruses and autoimmunity so they'll probably end up looking at retroviruses eventually.

 

Evidence based medicine - what it is and what it isnt
David L Sackett,
William M C Rosenberg,
J A Muir Gray,
R Brian Haynes,
W Scott Richardson

http://www.bmj.com/content/312/7023/71.long

David Sackrett is the father of evidence based medicine. It seems that the once for better patient care developed creteria are now hijacked by most of the health care providers, physicans and so on.

citations form above link:

"Evidence based medicine is not cookbook medicine. Because it requires a bottom up approach that integrates the best external evidence with individual clinical expertise and patients' choice, it cannot result in slavish, cookbook approaches to individual patient care. External clinical evidence can inform, but can never replace, individual clinical expertise, and it is this expertise that decides whether the external evidence applies to the individual patient at all and, if so, how it should be integrated into a clinical decision."

"Evidence based medicine is not restricted to randomised trials and meta-analyses. It involves tracking down the best external evidence with which to answer our clinical questions."

"However, some questions about therapy do not require randomised trials (successful interventions for otherwise fatal conditions) or cannot wait for the trials to be conducted. And if no randomised trial has been carried out for our patient's predicament, we must follow the trail to the next best external evidence and work from there."

So these statements show that evidence based medicine is primary for the patient and its illness not for "confirming studies" the statements also show that evidence based medicine also allows to treat patients if they cannot wait for trails beeing carried out.

So the mainstream medicine is misinterpreting the meaning of "evidence based medicine" of today.

 

Eventually, I think we will have to break into different groups to determine to real conduct good research that leads to causes and treatments (may I dare say cures?). I don't think you have to get ME/CFS in an outbreak for it to be infectious. There is an unusual amount of health care workers, teachers and flight attendants afflicted. All of these are exposed to more germs than the normal person. Some to more vaccinations also.

Maybe it is time to distinguish ME from CFS?

There is no such thing as CFS. It's perfectly appropriate to subgroup within ME (or ME/CFS), and I really don't care whether we use one disease title or several for the subgroups, but I do care whether we say there is some real disease of CFS as opposed to ME. There is no such thing as CFS, never has been, never will be.