My interpretation is this:
Chronic Fatigue Syndrome is poorly understood not just by the public, but by physicians, the media, and insurance companies as well.
Key criteria for the IOM, in order to effect change, are:
- More research dollars to determine the underlying cause of CFS/ME
- A re-branding of the disease
- Accurate diagnostic criteria
- A reduction in time to diagnose
- Better rapport between patient and physician
- A primary endpoint relevant to patient quality of life that pharmaceutical companies can use to develop treatments
Now we all know that CFS research has been massively underfunded to date, often has poor research quality (no offense to the researchers, this generally has to do with lack of funding resulting in small sample sizes and poor controls), and has often been co-opted to look at other, better understood research topics (MS, lyme disease, depression, PTSD, etc.). So putting this in the context of "what can the medical establishment do to fix this in the near term?", PEM as shown with the two-day cycle test showing a large reduction in VO2 max (
http://www.translational-medicine.com/content/12/1/104) offers them the best framework out of a number of poor choices.
Advantages include:
1) The new name gives physicians who don't know much about the disease a new focus: exercise intolerance. Instead of a number of negative blood tests (which, for the overwhelming majority of the patients they see means "not sick" or "getting better"), a physician gets a numerical readout that says this patient
cannot reproduce their level of exertion (VO2 max) two days in a row, on a level that
has to be pathological.
2) This, in turn, provides physicians with a clear cut result to validate their approach "This patient
is sick, and we're going to try drugs x, y & z to reduce their symptoms."
3) Exercise intolerance is a much better symptom for the physician to develop a rapport with the patient than other indicators like the pain, fatigue and mental fog. Pain, fatigue and mental fog are all subjective and have social stigma attached (Are they displaying drug-seeking behaviour? Malingering? How bad is it really? Do they just need more willpower?). They're also almost worthless diagnostically, between the number of other diseases sharing these symptoms and the fact that they are commonly faked. Remember, any normal GP is going to see many, many more problem patients than they do PWCFS, and they need a signature to reliably separate a "true" CFS patient from the noise.
4) Unlike all the PACE & GET controversy over the subjective nature of the "recovery", drug companies have a quantitative endpoint to test drugs against. This is
hugely important, with the FDA becoming increasingly demanding that new treatments demonstrate significant improved patient outcomes. Besides, the industry is highly conservative, and wants clear timelines, milestones, and go-no go decisions on their path to drug approval, and won't spend money punching smoke instead of a clear target.
5) With PEM as a focus, additional research dollars may become available from a number of sources. Pharmaceutical companies want a defined molecular mechanism to target therapies for. Strength of NIH grant proposals goes up because of the increase in perceived significance, and because the chance of success is improved by working on a particular aspect of the disease.
At the end of the day, is there the possibility that this new name and report will encourage focus on one subgroup to the detriment of others? Absolutely. Is SEID a compromise? Of course, this whole report is about bringing CFS/ME back into the public awareness, which means trying to appease everyone, including insurers. Overall, though, I think the IOM did a pretty good job with what they had to work with.
