The trouble here is that we are looking at an individual couple of cases whereas I was discussing the disease on a population level.
Certainly, we don't have much research on
any ME treatments, so everything has a large degree of speculation and anecdote at this point. At the same time, I have seen no evidence (other than that of the BPS school) that this disease, on the population level, burns itself out over time. In fact, there are many patients known to have ME for decades, which would be unlikely if time alone healed ME.
It would be foolish to say that diseases cannot get better by themselves; many autoimmune conditions can indeed burn themselves out even ones where there is clear pathological damage occurring such as lupus and there are even reports of some cancers simply getting better by themselves (not I'm not advocating these diseases remain untreated, my point is that the body's ability to repair itself often goes unrecognised!).
Agreed, there are reports of all kinds of illnesses going into spontaneous remission. They are rare and inexplicable. Even though spontaneous remissions are known to occur, no respectable physician recommends that a patient just wait a few years without treatment on the off-chance that they'll get one of the rare spontaneous remissions.
What many don't realise is that the vast majority of medical treatments given today simply help the body to correct the problems itself; whether that is weakening a pathogen allowing the immune system to destroy the agent or otherwise - to say that time doesn't help in chronic diseases is painting the wrong picture entirely.
Yes, many medical treatments are designed to help the body recover, but still require something from the body's own resources to affect a complete cure. Antivirals are an excellent example. They stop the virus from replicating, but they don't kill off infected cells. The body's immune system still needs to do that part. Does that mean the antivirals are unnecessary? Of course not. When the body cannot handle the infection alone, as is the case with chronic infections, the antiviral provides the
necessary support of preventing further infection while the immune system is trying to catch up. Without the antiviral, the infection overwhelms the immune system's ability to control the virus. This is particularly important with immune impairment, which is known to exist in ME. If the immune system is already struggling to contain and fight the infection, it's foolish to argue that because it still has
some capability to fight we should not provide the assistance it needs to succeed.
As far as disease definitions, I'd rather not get into that as I personally feel they are all simply placeholders until we find actual ways to test for the disease; personally I think any definition not based on lab findings is already on somewhat shaky ground.
I agree our definitions are placeholders at the moment. My point was that my experience is likely to be relevant only to the subgroup that is similar to mine, and may very well not apply to patients in a different subgroup.
The reality of my illness (and my daughter's) IS based on lab findings. We have multiple immune dysfunctions. We have multiple chronic and/or reactivating infections. We have abnormal CPET test results. We have measurable OI. You don't have to call it ME or CFS or ME/CFS if you don't want to. They are still lab findings that are consistent with the ICC and the belief of top ME/CFS experts as to what constitutes ME.
Yes, we need a cleaner definition. At this point in time it's probably more politics than lack of lab findings that prevents us from having that definition. That doesn't mean that ME doesn't exist or that our experts don't know it when they see it.
It's interesting to hear that you found you got an improvement from antivirals and other treatments but I'd be very wary of recommending these types of treatments in the absence of trials weighing up the risks and gains with good results and I think we all know that such a trial has yet to be published and replicated.
There is no doubt that what works for one patient diagnosed with "CFS" may not work at all for others with the same diagnosis. It is almost certainly true that everyone under the "CFS" umbrella does not have the same illness. For that reason alone it is nonsense to suggest that any treatment that isn't confirmed to be effective for
all CFS patients should not be used for
any CFS patient.
There are no published and multiply-replicated medical treatments for ME. Are you suggesting that patients should use no treatments for 20 years or more until that research is done, even when the medications are well studied and are used for the same symptoms in other illnesses? Valcyte is established treatment for CMV and HHV6 infections. The trials
are done. And published. And replicated.
Just because a patient has ME/CFS, that doesn't mean s/he shouldn't take Valcyte for a CMV or HHV6 infection because Valcyte has not been studied as a treatment for CFS. It doesn't need to be a treatment for CFS. It's the standard treatment for the known infection. Should ME/CFS patients without active CMV or HHV6 take Valcyte? I certainly don't think so, and I doubt there are many, if any, doctors who do think so.
I think some patients are having difficulty distinguishing between treatments which are a cure for ME -- there aren't any -- and treatments for known symptoms/conditions that are a part of ME. Treating symptoms and secondary conditions can make a HUGE quality of life improvement for ME patients. It's not a cure for ME, but if it makes it possible to lead a normal life, or even vastly improve quality of life for a still limited patient, it's well worth doing.
Antivirals are well-studied, well-documented, and approved treatments for certain viral infections. If you have the infection, it's perfectly reasonable to take the antiviral. It doesn't have to be an established treatment for ME; it the established treatment for the infection.
Antibiotics are established treatments for a large number of infections. If an ME patient has those infections, taking the appropriate antibiotic is intelligent, even if it doesn't cure ME.
A number of different medications are well-established treatments for various kinds of OI. If an ME patient has OI, then treating it with established OI treatments makes sense. It doesn't have to be an established treatment for ME. In fact, those treatments will probably never be trialed specifically for ME. They don't need to be. They're well-studied for the symptoms in question -- OI.
The risk is not in taking a medication that's not been trialed as a CFS treatment. The risk is in NOT taking a well-established treatment for a known condition.
I will continue to suggest that patients with documented active CMV and HHV6 consider taking Valcyte. I will also continue to suggest that patients with documented active EBV consider Valtrex or Famvir. At the same time, I will continue to (as I always have) discourage patients who do NOT have active CMV or HHV6 from trying to get Valcyte. Valcyte is a serious medication for a serious infection. If you have the infection, you should probably take the medication, even if it isn't a cure for ME. If you don't have infection, you probably shouldn't take the medication for it. Simple.
In my opinion, sitting around avoiding established treatments for known symptoms and secondary conditions because those treatments are not trialed treatments for CFS is a sad waste of a human life.