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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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andThe research community by not utilizing the Empirical definition at all; at this point it's essentially a dead definition.
It is also finally going to compare people who meet the Fukuda criteria with those who meet the Empirical Definition - a project that is 5 years overdue.
They're going to expend precious resources on a "dead" definition
I find that confusing. Am I missing something?
Latest study from CDC with Unger's name on it:
"Serotonergic neurotransmission plays a key role in the pathophysiology of neuropsychiatric illnesses... We used functional and structural equation modeling (SEM) approaches to assess the contributions of the polymorphism (rs6311), DNA methylation and clinical variables to HTR2A expression in chronic fatigue syndrome (CFS) subjects from a population-based study [so, almost certainly "Empirical," although it's not free full text (?) so I can't check].... This study suggests that the promoter polymorphism (rs6311) can affect both transcription factor binding and promoter methylation, and this along with an individual's stress response can impact the rate of HTR2A transcription in a genotype and methylation-dependent manner."
So yeah, genes plus stress response. Blame the patient.
No to Unger. She does NOT understand this disease. She CANNOT lead the needed revolution towards study of the very real biopathology. She is still stuck in Reeves' Wessely school of thought.
Protest to: Deputy Director Kathie Kendrick, M.S., C.S., R.N.,
Agency for Healthcare Research and Quality (AHRQ) (a HHS department)
And: email@example.com (Thomas Frieden, CDC Dir.) (hat tip: Khaly, CFS united)
And: HHS Office of Inspector General
Office of Public Affairs
Phone: 202 619-1343
Fax: 202 260-8512
Unless someone better connected has better ideas.
Has anybody ask Dr. Suzanne Vernon, the Scientific Director of the CFIDS Association of America to apply for the job?
I totally agree that Unger has not shown the initiative needed. She doesn't return emails or phone calls. While she didn't put her name on the most recent personality study, her name does appear on earlier questionable (i.e. unscientific psychosocial) research. Also, she did not participate in recent research indicating that PEM was essential to the diagnosis of CFS and finding a gene directing the activation of immune response to exertion. She has not at all indicated a willingness to move towards the scientific biomedical explanation and abandon the opinion-based psychosocial explanation.
However, she did participate in earlier good research (such as the finding of altered muscle membrane excitability). So if she can answer emails and phone calls and participate in interviews, and show both a renewed dedication to the biomedical explanation and the initiative and vigor necessary, she will do fine. But at this point, she is highly ambiguous, has little credibility, and needs to prove herself.
Does anybody have any idea who the other 2-4 people under consideration are?
By the way, to somatize means to express an emotional or social issue via a medical complaint. In other words, you are stressed, depressed, lonely, or bored and instead of reacting appropriately to those circumstances and seeking appropriate help for those issues, your issues are instead expressed by having a headache, a nervous complaint, fatigue, or some other random and unverifiable medicalized complaint and seeking attention and support from a physician. So this is the exact same idea as Wessely's bogus opinion that CFS is today's version of ennui.
I'm all for studying all the people in all the CFS definitions (even the "Empirical"), but it's totally irresponsible to study us together as one lot. This is not one disease. Return the MDD patients to their own diagnosis and study their physical disease separately. Return the Reeves disease people who identified themselves as "well" to headache or whatever they have.
Use a specific definition for ME and study that separately. Figure out how many of the others are atypical Myasthenia Gravis, atypical Multiple Sclerosis, atypical Lupus, atypical heart disease, and atypical whatever else. Then see what you have left, divide into categories as best as can be done, and go from there. It won't be perfect, but it will be a lot better than having a huge mish-mash of random unrelated conditions.
Disease categories are kind of arbitrary anyway. Is there any compelling reason why RA is a different disease from Lupus even though some disease processes are shared, yet there are two or three different kinds of Lupus which are all considered Lupus?
My two cents.
An interesting question. She is doing some really innovative work with a smaller budget than the CDC's program. She would certainly reach across the aisle. I interviewed her just after she got the CAA position - she said Dr. Reeves kept a really tight rein on the researchers there and she was very excited at collaborating with the rest of the CFS community. She would be a great director! But the program will always have its strictures and I imagine she is alot freer at the CFIDS Association.
I also wonder if they would have her. She was on really bad terms with Dr. Reeves when she left and shortly after she did the CFIDS Association turned up all those financial problems in the program and they really blasted other aspects of the program. I don't imagine that made the powers that be very happy.
Cort... I think you are right it would be very hard for Dr. Vernon to go back. Beside the points you raised I think she left because her mission is to concentrate on research that is biomarker probable and I don't think that the CDC's primary objective is biomarker research (as always I could be wrong). Dr. Vernon, as she stressed more than once in Denver last week, thinks the solution is to bring a biomarker to a doctors near you. The rest flows from there.
If it is Dr. Unger or someone else... maybe welcome them with a fax campaign? Just to remind them we are watching closely...
I'm positive I heard Dr. Unger say that their (CDC'S) new definition (yes, a new definition!) will not include post-exertional malaise, when she was pointedly asked by a committee member. I sat next to her for part of Science Day. How on earth could she sit there with all those exercise study results displayed right in front of her and then say it won't be in their definition?
I'm simply aghast at how hard we've had to fight for so many years with these people for funding, trials, treatments and a correct definition. It's like budging a mountain an inch a year when it needs to move miles.
I've got my fingers crossed for XMRV because that is the quickest route to legitimacy. Right now that's very appealing.
I think its it's fine to gather all sorts of types of fatigue under CFS but only, as you noted, if you subset them out which the CDC never did! That's the really amazing thing to me - they added all these people to CFS and then acted as if they felt they were all the same! That's a recipe for disaster and is one reason, I think, the research end of the CDC has fallen apart. I actually asked Dr. Unger about this and she agreed that subsetting - when you're using that definition - was important.
Warning, I'm feeling feisty.
I don't think its "fine to gather all sorts of types of fatigue under CFS" Cort. Quite the opposite - it's an affront to those of us who are living with severe physical pain, limited mobility, are home and bed-bound, have severe neurological symptoms, etc., to cast the net around anyone who is chronically fatigued. There isn’t enough money to do properly study people meeting the Canadian Consensus let alone the Empiric definition.
Where does this dilution stop? When we have too many subsets to do any meaningful work? Are we there yet? If you don’t start out planning to subset it’s pretty hard to do it cleanly and efficiently after the fact.
It looks like Dr. Batemen fed the Lights three tiers of patients by level of functioning. Perfect. I love it. Good study design. Gotta do it up front and it takes a very experienced clinician to do this. Will the CDC hire or collaborate with one? They haven’t in 25 years. Would the Lights study have any meaning if they got a heterogeneous mess of patients like the ones the CDC used for the Switzer study?
I'm against calling this illness ME/CFS if we're going to throw people with primary depression (for example) into that definition. We might as well call it ME/CFS/Tired/Sad/Mom-I-don't-want-to-go-to-school-today-my-tummy-hurts. I think the CFSAC may have missed the opportunity to tack a meaningful (CCD) definition to accompany the recommended name change.
The ongoing dilution of the definition needs to stop and we should be saying this in unison, at every opportunity. Thank you George for including the Carruthers et al (CCD) document with your letter to Dennis Mangan.
Limited research dollars need to be for THIS illness and the research needs to be laser-focused at the sickest people first and PEM needs to be required. If they want to throw lots of mental health money into the pot and examine the range of all sources of fatigue I might have a different perspective. As long as we’re getting pocket change no way do we throw the rope around any type of fatigue and call it CFS, let alone ME/CFS.
Told ya I was feeling feisty.
Allthough my statement was kind of stupid one - because there never has been the kind of funding (or interest) to subset ME/CFS - I do kind of feel I am being taken to task for something I didn't really say. You did print my quote - but ignored my qualifying statement ("but only, as you noted, if you subset them out which the CDC never did!") ie its only acceptable to have an expansive definition if you are going to devote the funds to break them up into their constituent parts. Obviously there's never been enough interest in CFS or the money to do that - so my statement is one sense is a kind of a ridiculous one.
That bigger Light study needs to be done and that question needs to be answered. The Light study just required Fukuda - which isn't so great - which does demonstrate that even a not so great definition can produce fascinating results. Hopefully a study which uses Jason's operationalized CCC will be able to determine how they break out The research community will also want to know if the Light findings extend to people with fatigue but who do not meet Fukuda - that is inevitable if the Light research catches on.
As someone whose grappled with PEM for decades I heartily agree with you about the centrality PEM should receive in any definition.