The new CDC CFS chief should be announced fairly soon and Dr. Unger is one of the candidates to lead it. With that fact in mind the Committee at times asked her some fairly pointed questions.
A Biological Basis – Really? Dr. Unger stated that ‘there has never been any doubt in the CDC program that there is a biological basic for this illness” which has (or at least had) it’s basis in fact. Even with the sexual abuse studies the CDC tied childhood abuse to cortisol problems (and a substantial portion of the study participants had neither) but it’s also true that the CDC has changed in the past couple of years.
Just four or five years ago they were publishing papers on ‘molecular profiling’, ‘autoantibodies to neuronal cell antigens’, mitochondrial dysfunction, complement and exercise, plus many gene expression papers as well as funding the Dubbo project on pathogens and immune factors. Over the last two years not only has there has been much less pathophysiology but it’s been much less interesting (allostatic stress, metabolic syndrome) and there’s been more psychology (personality disorders, psychiatric comorbidity, childhood trauma) as well as some standard sleep and definition associated studies.
A Mind:Body Disorder - Some time ago Dr. Reeves referred to ME/CFS as a ‘mind/body’ disorder – not as a disorder with my body elements to it but as a ‘mind-body’ disorder’. He also said he felt CFS was basically understood – which, given the lack of the CDC’s progress on biological issues – suggested he had accepted the British view of the disorder. At the meeting Dr. Unger referred to CFS as a mind-body disorder and then put it in context of a ‘psychosomatic disorder’.
What is a psychosomatic disorder? The definition of psychosomatic varies from place to place.
- ·psychosomatic /psy·cho·so·mat·ic/ (-sah-mat´ik) pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin.
- Referring to physical symptoms that are caused or significantly influenced by emotional factors. Gale Encyclopedia of Medicine.
- psychosomatic, medicine,: n the branch of medicine concerned with the interrelationships between mental and emotional reactions and somatic processes, in particular the manner in which intrapsychic conflicts influence physical symptoms.
The definitions are problematic; the first implies that symptoms have an emotional or mental origin and leaves no room for physiological abnormalities. With regard to the second it’s clear that physical symptoms can be significantly influenced by emotional factors (ie stress) in CFS but again, there’s little recognition of any physical basis to that interaction.
Certainly one would think that in any disorder involving the stress response that any stressors, emotional, mental or physical, could and would have negative effects. Mind/body work can certainly help in this area but the ‘stress-response’ scenario hardly covers the expanse of ME/CFS and many patients do not receive significant help using these therapies. Plus a look at the Journal of Psychosomatic Research found a journal dominated by studies on personality, maladaptive beliefs and the like with virtually no emphasis on a biological basis for anything.
Does Dr. Unger believe you can get at CFS solely using behavioral therapies, antidepressants or anti-anxiety drugs? Or does she believe there’s a ‘body/mind’ connection as well? From Dr. Klimas intriguing immune findings to Dr. Light’s startling exercise-induced increased receptor activity, to Dr. Lerner’s and Dr. Glazer’s EBV findings to Dr. Snell’s repeat exercise findings, there are no lack of interesting research opportunities in ME/CFS. The problem is that the CDC has been interested in none of them. Dr. Unger’s testimony, and it wasn’t particularly long, gave little indication she would actually embrace that type of research.
Personality Disorder - Dr. Unger waffled on Lenny Jason’s question asking whether she thought CFS was due to a personality disorder saying that she stood by the paper but that it really wasn’t her field….but she really is the acting director of the program and the CDC CFS team contain really does not put out all that many papers, and she should be able to speak on any on them. (Whatever Dr. Reeves faults, one suspects he would have been more forthcoming. Interestingly, the personality disorder paper found that 70% of CFS patients did not have a personality disorder.)
No Mojo! - The biggest problem with the research end of the CDC’s program (and it has several other ) is that, it has as Kim McCleary, put it, ‘lost it’s ‘mojo’. If you want to get a sense of how far behind the CDC program is relative to the rest of the field consider this startling fact; the CFIDS Association with a budget a fraction of the CDC’s has had more influence on the CFS research field over the past four years than the CDC has.
The CAA played a key role in funding research on exercise induced metabolic dysfunction, Dr. Light fascinating receptor studies, Dr. Glaser’s EBV findings and mitochondrial dysfunction in the brain. The repeat exercise studies have literally transformed with how this disease is studied. The Light studies bring ‘uhs’ and ‘ahs’ even from the most hardened researchers and the Shungu mitochondrial studies have been verified and are recipient of a substantial grant. Most of these results were derived from work prior to their Research Initiative. (Let’s not even talk about the WPI and XMRV…)
Meanwhile the CDC focuses on ‘sleep architecture’, childhood trauma, allostatic stress and metabolic syndrome. The little CAA and WPI have shown that you don’t need a pile of money to make a real difference in this field – what you do need is creativity and collaboration. Is Dr. Unger the one to bring it some mojo? Dr. Unger cut an intelligent enough figure but hardly a dynamic one and little that she said promised real change.
A Dynamic Enough Leader? – Even if Dr. Unger wants to elicit change at the CDC it won’t be easy. The new program chief needs to convince the CDC administration to throw some money at this disorder. Dr. Reeves had his chance – he had the benefit of the $12 million or so in payback funds the GAO investigation ended up granting him – and they benefited him nothing; as soon as the funds ran out CDC administrators allowed the program return to its anemic levels of funding (in fact funding fell). Anybody who runs the CDC’s CFS research program is going to up against an administration that, like the NIH, has never shown it’s really interested in this disorder.
Benchmarks – The next head of the CFS research program probably has at least two benchmarks they need to achieve early. One is probably having postexertional malaise take a central place in a new definition; the second is a sense of active collaboration with the research community. (Keeping promises about conferences would be nice as well).
I still remember Staci Stevens just laughing out loud when I asked her if the CDC had ever contacted her about her repeat exercise findings. That was a side-splitter for her. One would think a visit to Dr. Peterson and other physicians to just sit and talk should be high on any new directors agenda. Dr. Reeves unwillingness to collaborate clearly contributed to his downfall; the empirical definition he created was a professional disaster for him.
How interested is Dr. Unger in collaborating? She apologized for not returning phone calls – a strange statement for a candidate whose first focus should be repairing the CDC – CFS Research community breach.
Empirical Definition – The problem with the Empirical Definition is not necessarily its form; a wide swath of researchers agreed it was best to have a definition that could be used, via various questionnaires, to hopefully subset patients. The big problem was that Dr Reeves created criteria which deemphasized fatigue (even Dr. White questioned that one!) and put a new focus on emotional issues although Dr. Jason’s studies suggest that the role emotion plays in CFS is quite low. The research community by not utilizing the Empirical definition at all; at this point it’s essentially a dead definition.
Is Dr. Unger willing to redo the criteria and would that be enough? She said yes, to the criteria but later said that none of the symptoms found in CFS are unique to it, which suggests that she does not believe PEM is hallmark symptom.
Frontrunner? One has to think that Dr. Unger – given the few resources the CDC provides for the program – is the de facto front runner for the post but someone did get rid of Dr. Reeves and we won’t know what that did nor didn’t mean until a new chief is chosen.
Director Search – Three to five candidates are in the race to become Director of the CFS Research psrogram at the CDC and hopefully a decision will be made soon. (The president of the IACFS/ME, Dr. Friedberg, told me he had submitted a strong protest against the, get this, two-week filing for the position. It’s not clear if that’s standard for the CDC (it’s hard to imagine any government agency going against their regs- and there tend to be regs for everything) but it sure was a tiny window for a candidate to a) find the announcement and b) respond adequately to it and it did bring up the question if the CDC didn’t really want many candidates – already having the one they wanted, Dr. Unger, in hand. Shortly after the IACFS/ME protested the filing period was extended.)
Some Progress – more than 10 years after the CDC started its expensive random sampling procedures its finally getting around to looking at patients going to health clinics for CFS and determining these two groups match up. 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.
Research Data Center is Up – at some point in the not-too-distant future all the data CDC’s been collecting over the years will be available for other researchers to use. We can all complain about random sampling and the Empirical definition but there’s a lot of data in there on severely fatigued people, a good proportion of which are disabled. Some of them will look like ordinary CFS patients (whatever they look like) and some will not but the data center will have a lot data on people with unexplained fatigue and other problems.