Comments Submitted on Preliminary Versions of the Name Survey

 

GO TO THE SURVEY

 

Answers to questions about problems with the name:

* Erica Verillo summed it up well on her blog.

* It sounds like a euphemism for Chronic Fatigue Syndrome.

* It’s as trivial sounding as CFS It focuses on only 1 symptom of a complex disease

* It’s not necessary use the description of a disease’s symptoms as the official name of a disease, as SEID does. Chronic Fatigue Syndrome tried that trick and it failed miserable–it alienated patients and bewildered the healthcare profession. Should we rename Parkinson’s ‘Systemic Shaking Intolerance Disease’? ME is a much more desirable name. It has a 50+ year track record; it sounds medical, which engenders respect from healthcare workers and the general population; and patients like and respect it. Maybe not all patients have proven brain inflammation, but all patients have brain involvement. The important thing is not to stigmatize patients, and we need to have a name that doctors and patients respect. SEID does neither, because ME/CFS patients also suffer from INIS: Inappropriate Name Intolerance Syndrome’.

* What does SEID refer to anyway? It can’t be ME or CFS because the IOM report said SEID didn’t have an ICD code. ME and CFS both have ICD codes, so neither of them can be SEID. SEID must be something new then. HHS had better quarantine it before it spreads!

* Dr Melvin Ramsay’s is a multisystem disease, not a Systemic disease. exertion intolerant says an ME patient can be retrained with psychiatric exercise treatment to regain tolerance plus no mention of severe inflammation symptoms

* For me I believe the term “CFS” is just a catch phrase for folks with fatigue, many times severe fatigue. I personally don`t think CFS or any other name is the reason someone is ill. For example, I think CFS/SEID is a symptom of chronic mold exposure. I also, think its a symptom with cancers,and many other illnesses. I don’t believe CFS or any other code name is a disease in itself but a symptom of many diseases. I don’t care for either term. It undermines what the sufferer is truly going through and what may be going on underneath the title of “CFS” or SEID.

* If you read Ramsay’s definition of ME, it states that ME is multi system disease. This is my experience of the disease. Intolerant indicates that if the patient were given exercise therapy, their tolerance could be improved. The whole name centres around the exercise intolerance view, as CFS centred Round fatigue. There are so any other far more debilitating symptoms to ME and the worse the disease gets, the more symptoms and the more debilitating they are.

* I don’t think they should rename until the evidence is in about the neuro immune aspects of this disease and then that should be the central focus of the name. When people hear the name they should instantly recognize it is as serious as HIV, Lupus, or MS for example. Renaming it is premature although firming up the definition for research purposes is critical so in the next 5 years we will have valid and useful research results.

* It’s not clearly defined and “intolerance” sounds like exertion is something I’m not interested in as in laziness. I wasn’t lazy before getting this disease and now I don’t know day to day how I’ll feel. If I was a doctor and seeing this name I would think this person has psychological problems. It’s a step up from “CFS” but not by much.

 

Comments about preferred names:

* Tricky for me, as I am ICC M.E. all the way til doomsday, and believe that resistance is the only way. I would love to honor Dr, Ramsay however.

* I would be free keeping ME/CFS for the time being and revisiting the name question once we have more literature on brain inflammation, because I am convinced the ME name will eventually be supported by science.

* It’s unclear what condition the government is currently calling ME/CFS. The only case definition using ME/CFS is the CCC. The CCC defines ICD G93.3 ME according to the 2005 Overview of the CCC. The government is using ME/CFS to refer to something other than ME, however. It’s unclear what that something is. It’s hard to rename something when one doesn’t know what it is.

* CFS needs to phased out within five years and SEID needs to dropped and ME retained.

* just change the name to M.E.

* Leave the names alone, please. ME has been named ME for almost 60 years. CFS has been named CFS for 27 years. Simply list ME as exclusionary for a CFS diagnosis and keep ME separate from CFS following the ME-ICC. ME should also be exclusionary for a SEID diagnosis, whatever that might be.

* Again, I don’t think re-examined and finalized is quite it – if there is really going to be a review in five (big if) I’d rather keep ME/CFS as a placeholder and reevaluate the name then. Personally, I’d rather live with that and wait for awhile longer until we get ME. It is the name that makes the most sense (history, ICD code, used around the world).

* Chronic Fatigue Disease

* I think we should wait until research is in, 5 yrs, to accurately name

* ME

* Myalgic Encephalomyelitis

* SNID: Systemic Neurological Inflammatory Disease

 

Additional comments:

* If the US decide to adopt a name other than ME, it should not be used outside the US and the subject re accessed in the light of ongoing world wide bio medical research

* The entire IOM report, done by mostly amateurs in the field, should be completely scrapped. It can only cause confusion and havoc if implemented.

* Mass protest and storming the halls of justice. I know this is impractical, but social change historically has usually happened through resistance and being willing to go to jail.

* I do not think the IOM committee is valid because they have not included the veterans of this clinical field. They have also not even recognized many of the prime patient groups or blogs in this illness by considering their input or utilizing them to spread the word afterwards.

* My personal view is that ME can be partitioned into at least three degrees of severity as Ramsay did. Mild, Moderate & Severe. These can then be named as Hepatitis is, i.e. ME-A, ME-B & ME-C. Each degree if severity had differing symptoms and different degrees of disability. Mild ME would not have anything like the debilitating and chronic symptoms that ME-C (severe) has therefore cannot be used as an example for research for all the different degrees of severity and symptoms.

* I agree and am relieved that this “condition” is now going to be recognized as a disease, but there is much more to it that post exertion malaise.

* This is a serious disease that is progressive. And while yes, exertion is a component, we’re not dealing with a light fatigue or illness. This is devastating. My life and my son’s life have been seriously impacted. He hasn’t been in school for nearly two years and he was in the gifted program prior to that. I would like the name to emphasize the neurological and inflammatory aspects of this disease. It can impact the entire body.