In an interview on the Cure Talk website, Chronic Fatigue Initiative and Columbia University researchers Dr. Ian Lipkin, who's a neurologist, and Dr. Mady Hornig, a psychiatrist, stated that ME is a "neuropsychiatric" disorder because it affects concentration, memory and the autonomic nervous system. However, Lipkin and Horig don't consider the disease psychosomatic.
Labeling ME a neuropsychiatric disease is problematic for three reasons. First, Parkinson's, MS and other neurological diseases can affect concentration and memory. Yet no one calls them "neuropsychiatric" disorders; they're called neurological disorders.
Second, invariably some researchers--particularly CDC scientists and British psychiatrists--will gleefully misinterpret the term neuropsychiatric and continue to relegate ME patients to the psychiatric arena.
And third, ME is more than just a neurological disease. For starters, ME also affects the heart, kidneys and the immune system. In other words, it's a disease that attacks more than the brain. It's a multisystem disease. Here's an idea: Why not just call ME a multisystem disease?
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Call it by the same terminology as MS and Parkinson's, no need for Health orgs to reinvent the wheel unless you are trying to save money.
ReplyDeleteAnytime you get a psychiatrist in the mix, even with Lipkin, we've got a problem. Could it possibly be that Lipkin has bought into the political aspect of ME?
ReplyDeleteIs AIDS a nueropsychiatric disease? Every expert tries to put ME into there sphere of expertise. It is a NueroImmune disease. The word psychatric is innappropriate in any terminology. I am highly dissappointed in the CF initiative as it cannot even use appropriate termilogy and hence will probably not even study true ME patients.
ReplyDeleteI like multisystem. I am offended big time by the term neuropsychiatric. My daughter has no psychiatric problems and it makes me sad to think that psychiatrists still have not found the compassion to let sufferers free and stop trying to control them as psychiatric patients.
ReplyDeleteFor what purpose do they limit the characterization of the disease to only one system?
ReplyDeleteThat system cannot possibly account for everything.
What are they trying to do by limiting it that way?
Why don't they use ICC?
Are they afraid of finding something?
Yeah, that wouldn't bug me if Alzheimer's were also labeled "neuropsychiatric." Nobody thinks Alzheimer's patients could remember better if they just pulled themselves together.
ReplyDeleteI agree 100%!!
ReplyDeletePerhaps brcause of the mania this illness instills in some patients. Patients can manifest mental disorders such as schizophrenia (sp?), Mania and take on suicidal tendencies in some cases. This goes beyond "systemic" and crosses into psychiatric territory. I believe these issues can be reversed, however, without treatments, psychiatric manifestations do occur. I also believe the psychiatric issues are secondary to the biological issues. Links show schizophreia can be caused by viruses, the same viruses commonly seen in CFS/ME patients. The Universe is just not that aware of viral and pathogen impact as of yet, so the tendency is to "label" issues into a category. Psychiatric being one of them. Politically, I don't think neuropsychiatric is such a bad label. The Neuro explains the biology which is primary, the psychiatry is secondary. MS is is neurological disease as you pointed out. CFS/ME is clearly a Brain Disease. The point of current research is to define the biomarkers and get to the bottom of this puzzle. Because a project is being called neuropsychiatric, in no way means that this will end up being the name of our illness. I think the hoopla about this name is not an issue. I believe the name has not yet been decided on. We do not know what we are dealing with as of yet. We know-Infectious Disease, genetics, Immune dysfunction, Gut issues and Brain disease. The name will come later. The focus needs to be on research, lots of it and funding it, not the name. Julia Hugo Rachel
ReplyDeleteThanks, Mindy, for illuminating the problems with the terms "neuropsychiatric" and "neurological disorder." I strongly believe that the only accurate term is "multisystemic disease."
ReplyDeleteFlo
Mindy I have always enjoyed your posts but this is not helping! You know very well that no disease has a name or classification that explains every system the disease affects and this is true of so many diseases, the details are in the *description*. M.E. is primarily a neurological disease, and it has been classified correctly as a Neurological Disease by the WHO since 1969.
ReplyDeleteWe have suffered terribly since the CFS fatigue name and definition problem were invented, and while we are still trying to sort that out along comes Lipkin and Hornig falsely claiming it to be neuropsychiatric, but instead of rebutting that and questioning what the CFI is really about, you want to switch the conversation to inventing a new category for it to be classified under?
I have never thought it was to help cfs patients The clue is in cf icd (10 f48) why could nt they just call it the cfs or me because it stinks thats why and if this study goes ahead it will be used against us to say what do these paients want we ve just spent 10 million on them i for one want nothing to do with it the one thing we cant afford to be is naive
ReplyDeleteDiseases are sometimes named by their effect on bodily systems such as meningitis, encephalitis etc. Sometimes they are named according to their cause such as influenza because the cause is the influenza viruses. Sometimes they are just given the name of a prominent researcher, such as Alzheimer. The name ME is fine but it does refer to neurological effects. Current research almost all points to an immunological disease affecting the nervous system not the other way around. So thinking of it as a neuropsychiatric illness is very misguiding
ReplyDeleteThere is no mystery to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), as so many people will have you think. CFS/ME leads to HIV-Negative AIDS (i.e., idiopathic CD lymphocytopena), a clinical diagnosis that I currently possess.
ReplyDeleteIt horrifies me on a regular basis that the medical establishment, politicians, and media simply have not gotten around to reporting the fact that HIV is not the cause of AIDS.
While millions of ailing immunodeficient CFS/ME patients get purposefully belittled and neglected, perfectly healthy HIV+ people are convinced to take a bunch of expensive, toxic medication. What a $ham.
I am living proof that CFS/ME patients are the real AIDS patients, while existing AIDS patients simply have CFS/ME. And HIV+ people, well, they should seriously just walk away from this nonsense.
See how easy? Mystery solved.
www.cfsstraighttalk.blogspot.com
Perhaps now, AIDS funding can be diverted to CFS/ME where it truly belongs.
Hi,
ReplyDeleteI read your blog and i am so much impress to read because its more useful to know about CFS.
This information is more effective information for me and also for other people who have Asthma.
Thank You so much for this information.
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Chronic Fatigue Syndrome Symptoms
Donate blood fcuk them donate organs maybe these circus clowns will need transfusions...I feel great when I donate blood...If I die though I would not give them my organs they are not worth my heart or lungs...
ReplyDeleteIan, ME appears to be a viral illness and evidenceof enterovirus is still detectable long after onset (Chia and Chia 2008?). No obvious immunological abnormalitiees shortly after onset (Australian study e.g. vomer-conna). Various metabolic problems though (e.g. Lane et al 1995 BMJ). So some of us are looking at mitochondria. Adrenal gland may also be affected but we have yet to identify immunological abnormalities in acute phase so the ones in chronic phase may be due to other complications. In a nutshell, the core symptom is an abnormal response to minimal exertion. Snell has just publshed a very interesting paper, consistent with what Lane, Sorensen, and various others have found. Single tests may be misleading. Test next day, e.g Paul et al Europ J Neurology 1999, and the abnormalities reveal themselves. Currently, research is trying to define post-exertional abnormalities. Very interested in Snell's work. Post exertional malaise is optional for CFS, but required for ME. So ME is a more homogeneous population. All have to be disabled by minimal exertion, so we're looking for reports of muscle weakness that lasts and may get worse even after you've stopped activity. I highly recommend Paul et al's study. See what you make of it.
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