M.E and CFS
For the benefit of all of the patient groups involved, doctors must return to the age-old medical principals of correct diagnosis (a) careful history, (b) detailed physical examination and (c) appropriate investigation. As Dr Byron Hyde MD explains:
'Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion. Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndromei has totally altered that essential medical guideline. Patients are now being diagnosed with CFSi as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything.' It is important to be aware that Myalgic Encephalomyelitisi and 'CFS' are not synonymous terms and should not be used interchangeably, and that 'fatigue' is not a defining feature of M.E. nor even an essential symptom of M.E.
CFS was created in the 1980s in the US in response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the patient has any other distinct and specific illness named 'CFS.' Every diagnosis of CFS -- based on any of the CFS definitions -- can only ever be a misdiagnosis.
The bogus disease category of 'CFS' has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and various unrelated fatigue syndromes for the benefit of insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.
The distinction must be made between terminology and definitions.
http://www.ahummingbirdsguide.com/whatisme.htm
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There are now more than nine different definitions of ‘CFS.’ All each of these flawed CFS definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue. The fact that a person qualifies for a diagnosis of CFS, based on any of the CFS definitions (a) does not mean that the patient has Myalgic Encephalomyelitisi, and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ A diagnosis of CFS – based on any of the CFS definitions – can only ever be a misdiagnosis. All a diagnosis of ‘CFS’ actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease. As Dr Byron Hyde M.D. explains, the patient has:
a. Missed cardiac disease, b. Missed malignancy, c. Missed vascular diseasei, d. Missed brain lesion either of a vascular or space occupying lesion, e. Missed test positive rheumatologic disease, f. Missed test negative rheumatologic disease, g. Missed endocrine disease, h. Missed physiological disease, i. Missed genetic disease, j. Missed chronic infectious disease, k. Missed pharmacological or immunization induced disease, l. Missed social disease, m. Missed drug use disease or habituation, n. Missed dietary dysfunction diseasesi, o. Missed psychiatric disease (2006, [Online]).Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
The only thing that makes any sense is for patients with Myalgic Encephalomyelitisi, to be studied ONLY under the name Myalgic Encephalomyelitis – and for this term ONLY to be used to refer to a 100% M.E. patient group The only correct name for this illness – M.E. as per Ramsay/Richardson/Dowsett and Hyde – is Myalgic Encephalomyelitis. M.E. is not synonymous with CFS, nor is it a subgroup of CFS. (There is no such disease/s as "CFS.’) It is also important that the only terms which are used are those which do have an official and correct World Health Organization classification.
There is no such disease/s as ‘CFS’ – the name CFS and the bogus disease category of CFS must be abandoned (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ 'CFIDSi' and 'Myalgic Encephalopathy' and others), for the benefit of all the patient groups involved.
Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
CFSi (as it is called in the US) is highly controversial, but THERE IS a "disease definition" for it established by the Center for Disease Control (CDC).
http://www.cdc.gov/cfs/
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Nope.. not a syndrome anymore..
"CFSi is a serious illness and poses a dilemma for patients, their families, and health care providers. This web site aims to provide evidence-based information concerning the illness, its manifestations, and treatment."
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
syndrome syn·drome (sĭn'drōm') n. A group of symptoms that collectively indicate or characterize a disease, a psychological disorder, or another abnormal condition. ----------------------------------------------------------------------------- The American Heritage® Stedman's Medical Dictionary Copyright © 2002, 2001, 1995 by Houghton Mifflin Company. Published by Houghton Mifflin Company.
Of course, I was curious, thinking I've been misusing the term for much of my life, but this medical dictionary (and several other dictionary citations) all say the same thing. I'm thinking this is just another case of the boundaries /rules becoming 'grey' or 'fuzzy' over time.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Well I guess technically it's a syndrome -- what I was trying to convey is that CFIDS is now a CDC- "recognized" illness and has a classification of it's own. It is also recognized as a "disabling" illness ........whether it's a "syndrome" or not doesn't lessen it's effects.
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
Never said it did.
As a matter of fact, when no one could figure out why I had 'good years' and 'bad years' and why I couldn't get up off the chair the night of my best friend's bachelorette party because I was just too exhausted to dress and go, I decided for myself that I had chronic fatigue syndromei.
It was a good twelve years later til the cpni invaded my brain and someone decided to label it MSi.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
I've been diagnosed with CFIDSi and never ever call it CFS. My endocrinologist has verified that I have CFIDSi because of all of the documented hormonal involvement and dysfunction I have.
I think CFIDS is a much better description of what I have vs someone that simply has more of a puzzling "chronically fatigued" condition or syndrome which might be explaine with further testing for thyroid or adrenal problems or depression, all of which are supposed to be looked for and treated before someone is given a label of either CFS or CFIDS.
I would never consider either condition "simple."
CFIDS = chronic fatigue immunei dysfunction syndrome
CFS = chronic fatigue syndromei
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Jeanneroz - I usually mention it just the way I did here, sort of in passing, so I'm not surprised you didn't catch it. I've had this energy rollercoaster going on since I was a teen. I might go full speed for a few months or a year, then totally crash and barely be able to get to work, sleeping through the weekends and feeling totally non-functional for months on end. It wasn't depression (I'm terminally optimistic).
When my dad died in 1993, I had a huge financial mess on my hands and had to work both my full-time job and another six to eight hours a day on a small rental property he owned (in order to make it decent enough to sell). I worked an average of fifteen hours a day, without a day off, for nearly a year. The work at the building was all physical and I pushed and pushed myself.
At the eleven month mark, I could not lift a paintbrush or a hammer. Some switch inside me turned off and I couldn't even maintain concentration on small tasks. My mother chided me about never going to the property to do any work and I finally hired a guy to finish the job. It took me several months to feel any energy had returned and it was nearly a year before I hit another ''peak, where I could go anywhere, do anything, had energy to burn and total clarity and ability to concentrate. Fortunately, at my 'real' job, I was working with a team of people who took up my slack during the few months my energy disappeared.
This has been a pattern throughout my life, though it wasn't ever so profound again until just before the MSi diagnosis. For a year before the diagnosis, I'd been begging my doctor for ambien or something to help me sleep. I'd gotten to the point I couldn't get to sleep before near-dawn, then slept like I was dead and could NOT drag myself to do even the most basic things like laundry or grocery shopping. I ordered groceries online and used every energy-conservation strategy I could find. I demanded a reassignment at work (long story, but I was doing two peoples' jobs for one salary), which helped.
Once I felt I was coming up out of the exhaustion-hole, I was on a roll. Everything was great. Then optic neuritis hit and I was diagnosed with a disease with a 'real' name. I guess that's why I describe myself as an MSer, but the chronic fatigue thing was pretty much always there. I rarely say MS, even here, because I think MS is just one manifestation of cpni infection, like chronic fatigue or rosaceai, etc.
I have always kept a journal, since my early teens. One day, I'm going to re-read it and try to chart my ups and downs and document the pattern. I'll bet it will be very clear, in hindsight.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Reenie, same here..diagnosed officially CFIDSi/ME at the FFC in WA 3 yrs ago.
Lee, the CDC, back in the day, downplayed the "outbreak" that occured in '88 I guess it was. Instead of seeing what the WHO was doing, they just coined it fatigue. I for one, supported the name change lobby that Pro Health, Immunei Support were doing as coining this illness as fatigue minimizes the fact that this illness can kill you. The USA is not a world leader on this stage. I disagree that these illnesses are one & the same. There may be misdiagnosis occuring all over the world but that doesn't mean on the world stage we are talking about 2 seperate illnesses. This thinking shocks me actually as much as the internist for the disability insurer who said the FMSi & CFS are one & the same illness???? says who I say!
MacK, I too have never heard you say you had CFS, just MS & that even that was a secret from your co-workers & others.
Anyway, bottom line for me. I have ME but in North America, no one knows what the heck it is so it is easier to said CFIDsi until time catches up with the changes.
The UK has taken some steps backward in their definition of ME this past year even though the WHO differs. The whole thing is just a mess right now & that doesn't serve to get research dollars for this illness.
peace
r
CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<
I have cfsi or cfidsi or me. One doc wants to call it fmsi or fibromyalgia. I could care less, although I used to campaign with RESCIND to change the name.
I have Social Security disability with the cfs label. That makes the name worth a bit of money to me. It's not good for much else.
Indeed, I also have borreliosis or Lyme disease and maybe had babesia. I know and can document that I was, maybe am, infected with several pathogens. Again, the names don't matter - what matters is how to fix the mess.
Paula
Paula Carnes
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Lee, I've been using (or misusing) the terminology for some time here. I chose to do so, because this isn't a CFIDSi/ME/CFSi site, and I wanted to allow cross-subject searches. I'm not quite sure how to handle that, though -- publish a disclaimer whenever I use the term? come up with a meta-term like "Chronic fatigue immunei dysfunction spectrum disorder" or something to cover them all without misusing the terminology?
I don't really know what to do with it. I'd hate to have someone miss the CPni info because they searched on "Myalgic encephalomyelitisi," but the post used the term "Chronic Fatigue Immune Dysfunction Syndrome" for the same CPn-caused malady.
Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Began rifampin trial 1/14/09
Currently: on intermittent
Paula... personally it does matter to me and I wish the name change had gone through..... it has a bad enough "label" with CFSi -- people (who are usually uneducated and ill-informed about the illness) think we are just tired.
I agree, getting healed is the ultimate goal but it is difficult to try to explain to friends and family -- they just don't understand for the most part. In the end it doesn't really matter that they do, but because they don't understand it also contributes to some alienation from them.
Social Security calls it both: http://www.ssa.gov/disability/professionals/cfs-pub063.htm
"When an individual with Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue and Immunei Dysfunction Syndrome (CFIDSi), applies for Social Security disability benefits, we must decide whether he or she is disabled under the law. We base our decision on information you provide and other evidence, including information provided by the individual. The following guidelines will help you understand the kind of information we need to evaluate claims filed by individuals with CFS. "
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni