Why we need a new name.

[Kati]

Yesterday was my first appointment to a specialist regarding my disease that is officially "post viral syndrome". I told the very reputable rheumy that I self-diagnosed with chronic fatigue syndrome. The bad news is she told me she didn't treat chronic fatigue syndrome.

She was very nice and listened to my story, and also listened about the retro-virus discovery, she almost fell off her chair and gladly took on the Science article that I had copied for her. And in front of me, she phoned an infectious disease department at the teaching hospital she belongs to and asked "Do you treat chronic fatigue syndrome?" I cringed. There is the end of it. They said no, thank you and goodbye.

The name is holding us back. I am sure it doesn't come as a surprise to any of you, it was just my first experience of it. Should she have said I have someone with a chronic viral infection, and neurological abnormalities, would they have considered ?

Do they have the right to refuse care, because this would be discrimination. In Canada, we all have right to health care, but obviously, according to the disease you have, some are lucky, and some are not.

Just my comment for today. In this time of XMRV replication study results trickling in. Let's not repeat the past, and who is the CDC to have to decide on a disease's name? Where are they anyways? Maybe they took the money and ran

 

[alice1]

I made it as far as seeing 2 infectious disease docs at a hospital in TO.I said 23years ago I was diagnosed with EBV and they said they call it Chronic fatigue Syndrome.....long story short,they didn't want to do testing for any possible underlying viruses and said that I should anticipate the fatigue(which is always) and pace myself, to exercise more and get use to the fact that I may be tired for 20 more years.WFT! I left the room.I don't think they care what you call it,they don't want to know about it.

 

[Kati]

Alice, this is so unacceptable. Maybe we need to show up to our doctor appointments with our own lawyers. Would love to hear them saying "Objection!!!!" after they said what they said. We have the right to care. I would like to compile stories just like yours, so if there are more of you out there, please speak up.

 

[Chris]

Kati and Alice, my story is brief but not so different; after my first GP in Victoria told me that my symptoms were due to "anxiety" and "emotion" and that he was not going to send me to any more specialists, my second sent me to a rheumy who confirmed that I had CFS, but ordered no tests and told me that I knew more about it than he did (that was honest--he seemed intelligent and generally competent). My new GP gave me a copy of a document downloaded from UpToDate, an American outfit that charges to keep a website for the continuing education of doctors, but the chapter on CFS was written by a Reeves type, and though dated Jan 2009 a discussion of definitions conspicuously omitted any mention of the Canadian Concensus document. I offered my new doc in return a copy of the terrific short version prepared by Bruce Carruthers, but she declined to accept it, saying she was a gerontologist, not a CFS specialist. She refused to prescribe LDN because she was "unfamiliar" with it. Health Canada is on the warpath against supplements and has obviously become an arm of big Pharma and Codex, doubtless with encouragement from the Harper gov. Acetyl-L-Carnitine, one of the most often recommended supplements for CFS, is technically not allowed in Canada except with a doc's prescription--but mine of course knows nothing about it and therefore...

The problem is world wide, but we Canucks have special problems of our own, and should get something going--PM or email me if you have any ideas. My local CFS group seems more into social support than advocacy... though I will test the waters at our next meeting. We need help! Best, Chris

 

[garcia]

As much as I hate mainstream doctors and their attitude to CFS, the one thing I will concede in their defense is that if I was a doc and someone came to me with a disease as stupidly named as Chronic Fatigue Syndrome, I would find it hard to take it seriously as well. The name starts off badly with the word "Chronic". It sags in the middle with the word "Fatigue" and the less said about the end i.e. "Syndrome" the better!

As others have pointed out we don't call diabetes Chronic sugar syndrome, or MS Chronic imalance syndrome.

Only a name change will bring a game change.

 

[valia]

If we all refused to use the term CFS and called it ME or whatever was decided on, it would eventually become accepted practice (simple thing for all of us to do really)

Kids make up words all the time and before you know it they are in the dictionary and we are all familiar with them.

 

[Kati]

Here is a quote from Leon taken from the WP Facebook site:

Leon King Had to go for a mental exam today for ssdi?? Have fibromyalgia and chronic fatigue.
Tested positive for xmrv pcr and culture. Your not going to believe the first thing the doc ask. Was there any trauma in your childhood? I said are you taliking about physical or emotional trauma? Emo she says
I told her no and I had a lo...vely childhood with a big family.


I was ask to count backwards. Spell backwards for over an hour. Right before I left she ask again.
Usually there is some trauma in your childhood. Are you sure????

I wanted to say Lady you are my trauma right now.

It is like you take 2 steps forward and 100 back today.
I am sure quite a few of you had to go through this. Since the news has not been that great last night or today. I just thought I would share since we are talking again about the lack of respect and recognition of this illness.

What else will they do next??? We all know where they take their information. This is so wrong. I maintain that we should show up to our assessment and dr appointments with our lawyers...

 

[PoetInSF]

I don't think name change will help in this case. A new name may make it sound more impressive to your family and friends, but people in UK with an impressive name like Myalgic Encephalomyalitis appear to be treated as badly. What's really needed is clinician education. If you are in Canada, why don't you instead print Canadian Consensus Document and take it to your primary care doctor? It's about the best diagnosis/treatment guideline there is, and all doctors should read it.

 

[Kati]

Poet, your point is a valid one. I am so tired already (no pun intended) about the lack of knowledge, and the bias of the physicians. It is obvious that they indeed need education about it. But how to go about with that? It would take at least one if not 2 generations of doctors to change their minds about the disease.

Re: Canadian Consensus. I didn't get it printed but I copied it on a CD for my dr, Not too sure if she read it, she hasn't said a word since she filled out a rheumy consult- that was 6 months ago. IMO they're all tight lips, don't want to talk about it, don't want you in their office, don't want to fill out the papers, don't want to learn or even be curious about it.

I'd rather have cancer.(this should be our slogan, maybe they'd listen)

 

[PoetInSF]

Well, you probably can read as well as your doctor can and there isn't much more they can do for you anyway, other than prescribing drugs to relieve specific symptoms. You could as well implement your own treatment program and then use them as resources when you need things like prescription drugs. That'll also save you $400/hr cash that you would have to pay to places like Lapps Clinic. Clinician education is still very important though, because cfs patients in early stages may not know how to manage the disease, and studies say that an early management is the key for better prognosis.

 

[alice1]

I've had cancer and I can honestly tell you this is worse.

 

[dipic]

Only a name change will bring a game change.

I have to respectfully disagree with you there; I hold the opposite to be true. There have been numerous attempts in the past, with a commitee even formed, to bring about a change to the name - all of which, obviously, ended in failure.

If the XMRV thing pans out, however, things might be different. There is already a name proposed by the WPI, which I'm sure you're already aware of ("XAND").

 

[Kati]

Well, you probably can read as well as your doctor can and there isn't much more they can do for you anyway, other than prescribing drugs to relieve specific symptoms. You could as well implement your own treatment program and then use them as resources when you need things like prescription drugs. That'll also save you $400/hr cash that you would have to pay to places like Lapps Clinic. Clinician education is still very important though, because cfs patients in early stages may not know how to manage the disease, and studies say that an early management is the key for better prognosis.

I need the doctors for diagnostic testing, to confirm it is not something else, to verify if any viral agent is over active in my body and whether that could not be treated, and to help out with disability- So you want them damn well educated, and competent at what they do, including taking care of their CFS patients.

I live in Canada in a socialized health care, and honeslty, I feel I have the same rights as a cancer patient to be treated with respect, dignity and competence. (Hmmm., I like what I said, maybe I will save it for one of my letters)

 

[PoetInSF]

I need the doctors for diagnostic testing, to confirm it is not something else,

OK, I thought you were already diagnosed. It's important to make sure that it is not something else treatable, I absolutely agree. Other than that, CFS diagnosis is fairly useless if you are not looking for a disability claim, as all available treatments do not require specific CFS diagnosis.

 

[talkingfox]

I'm one that believes the name does indeed matter. Here's an example unrelated to CFS

I was very active in the very early stages of HIV/AIDS activism due to the fact that people I loved were dropping like flies. For a long time there was no name for the thing. btw a whole lot of my friends got told it was all in their heads as well, at least until they started developing cancers and whatnot. But they got treatment for symptoms at least

Then they slapped the name GRID on it (Gay Related Immune Disorder) and all of a sudden my dear ones ( who were NOT all gay either) were treated like total pariahs by the medical establishment.

So yeah...names DO matter.

 

[Kati]

Thanks Talkingfox, i believe that as long as you will tell a dr that you have chronic fatigue syndrome, they immediately have a bias agains you. Like GRID I supose, like well it's your fault.

It sounds like the CDC will not take leadership on this. Nor that they should, honestly. They have done enough damage already.

Perhaps the CFSAC should start leading and taking more power- and pressing the issues. So far, WPI has spoken. We are waiting for the blood supply studies, the replication studies. There needs to be education for all physicians.

We've known of 2 PWC committing suicide since mid December. MAybe with better care, better understanding of the disease and from the treating doctors, from disability and health insurance, these deaths could have prevented. Maybe a new name with HELP, not solve everything, in making this damn disease legitimate once and for all.

Sorry if it's a bit scattered. To me, the name ties everything together.

Today is the day to make a difference.

 

[George]

It's the researchers who get to name the disease

Usually it's the researchers who name the disease. HIV wasn't HIV at first it was HTLV-III. They renamed it to HIV but the action it caused was AIDS. So you get Human immunodeficiency virus and deveolope acquired immunodeficiency syndrome. So we will have to wait and see what the researchers say. Since the WPI was the first to come up with the association with CFS/ME then they will get to name it.

I noticed the Dr. Klimas mentioned that it may not stay XMRV once the retrovirologist get it in the lab and figure out where it came from and what it does they tend to rename things. It's ironic that mice will probably get injected with this to see what the effects are.

I for one would like to put in my vote now. I like XMRV just the way it is and I would prefer to educate my Doctor on XAND.

I do not want to end up with NIV (Neuro immune Virus) and and then have NIDS (Neuro immuno syndrome).