August is "Call it ME" month.

[gregf]

Thread title : July is "call it ME month".

I will donate $1000 to Count ME In, if .....
Cort can go one calendar month calling our illness ME and not CFS or CF,
in posts or blogs on the PR forum.

Of course, quotes of other's work are not counted nor any semi-legal documents which should be ME/CFS for now.

If we catch Cort saying CFS, then he has to start again the next month.
But I will jackpot it $100 for each month that is necessary.

I have contacted Cort and he has graciously agreed.

Without starting another name argument, I think we should use the name ME as a weapon for our cause, just as CFS was used against us for 25 years.
And we should start here in this wonderful forum, among our selves.

I hope others will join in, make a promise to call it ME here, and with our friends and family.
That always leads on to a great opportunity to explain our cause.
I would love to here from any converts.
Make this worth while for ME guys.

 

[Enid]

I quite agree gregf - chronic fatigue is a misnomer and maybe the cause of all our woes.

 

[Tulip]

I agree to. CFS is the antichrist

 

[max]

gregf

This is a good idea, no, this is a very good idea. I have often wondered why we give credibility to the Wessely school by adopting/accepting their terminology.



max

 

[maddietod]

lol, my biggest problem with this idea is that I am unable to remember what ME stands for! I'll have to go copy it out on a piece of paper 100 times, repeating it out loud as I write.

 

[gregf]

It would mean a lot to me, if just a few more of the senior US forum members,
would join in the spirit if this. Just try using ME in casual conversation rather
than CFS, especially here in the forum. Even for just the rest of July.

Please. :innocent1:

Thank you so much to Cort who is enthusiastically helping out.

 

[SilverbladeTE]

To use the term" Chronic Fatigye Syndrome" for us, is much the same as using the "N' word" for a black person
it is a term of disepmpowerment and abuse, misused and redirected by the abuser to weaken and attack the victim.

Sly and evil bit of psychology that came up with that term, not Science. Hey you think psychiatrists/psychologists don't know the means and motives of abuse?

Using "CFS" is like saying a person with cancer has "Self-Inflicted Cell Division Syndrome"!

Myalgic Encephalomyelitis is factual and sounds like a "real disease" to the lay person so it is thus, not insulting, not disempowering.

 

[maryb]

Funny isn't it but I've never called my illness CFS - thats a terrible name for what is wrong with us. I realised early on I had ME and as I never go to see my GP it really was never an issue, the few times I did see her I referred to it all the time as ME, she never said anything. Many GP's know there is something seriously wrong with ME patients but not many (erm none) have the guts to come out and challenge the establishement, who after all pay their big fat salaries.
Good work gregf.

 

[WillowJ]

I prefer to say ME (I use ME/CFS whenever I need to avoid confusing someone who wouldn't know what ME is; if it's something written or I otherwise have time, I take the opportunity to explain that ME is the proper, WHO-registered name, while CFS is a popularly-recognizable, but incorrect and confusing, name, which is also used for other conditions misdiagnosed)

 

[gregf]

I agree Willow.

This challenge is just for posts or blogs here on the PR forum.
And I am hoping a few more will join in the spirit of the challenge.
It's a significant amount of money for ME.

Actually in formal situations, we need to use ME/CFS for legal reasons, probably for some time to come.

 

[justinreilly]

Actually in formal situations, we need to use ME/CFS for legal reasons, probably for some time to come.

What legal reasons? I am a nonpracticing lawyer and I see no reason to say "CFS" including in "ME/CFS." If everyone would use ME (or ME/CFIDS when speaking to 'civilians' who don't know of ME) we would be treated much better and get more funding for bona fide research. We have to lead. CDC, NIH, CAA etc will never lead, only follow. If we use ME exclusively others like CAA and CDC will have to eventually. Everyone please use only ME!!!

 

[WillowJ]

reasons being to not allow the health authorities to get away with pretending they have not "diagnosed" and treated any ME patients under their CFS protocols, have not failed to diagnose ME in the Incline Village outbreak, etc.

also because all ME patients in the US are presently not able to be legally/officially diagnosed with ME (it has been written out of the ICD-CM), and because there are important findings in the research under the title of CFS (using Fukuda or sometimes CCC).

However, ME is being written back into ICD-10-CM; the description for CFS is copied from ICD-9-CM and being used under the heading of Post-Viral Fatigue Syndrome in G93.3 in ICD-10-CM. However the trackback is ICD-9-CMs 780.79, "other malaise and fatigue" (described as asthenia, which means weakness). ICD-9-CM for CFS 780.71 is converting to R53.82, "Chronic fatigue, unspecified." The 15th is the last day to submit comments to the CM work group.

 

[OverTheHills]

Well Greg, thankyou in advance because Cort has just posted a very long three part article on the Light's research, theories about dorsal root ganglia and VSV virus. AND they are all peppered with 'CFS' (although there is some 'me/cfs' in there too). So I think that means you donate the money to an ME charity and Cort tries again.I'll post against the articles later asking Cort to make changes .

OTH

 

[gregf]

Well, I want this to be a bit of fun.

So if Cort is willing to have another go in August, then the donation jackpots to $1100.*

Otherwise, I will send a smaller donation thru, which was my intention anyhow.

*Donation is in Australian dollars. $1100au ~= $1170 us, - Paypal fee, to Count ME in.

 

[gregf]

Hey Justin.

We think, there is a possibility, that the name CFS is being used by the CDC, to avoid legal liability.

They have changed the definition of CFS to a vague psychiatric illness.

Skip forward to the court case.
Our lawyer : "You completely failed in your duty to address M.E. didn't you ?"
CDC defendant : "No we did not. We did not address ME. We addressed the psychiatric illness CFS".
Judge : "Case dismissed".

So until the court case is over, and we can finally all say just "ME", we are stuck needing to say ME/CFS, especially in any research announcements or legal work.

But in the meantime, we should be using ME in our casual conversation. It is a powerful weapon, that we can turn against the CDC and Wessley school. When people ask "oh what's ME?", it gives us a chance to explain.

Mmm. A non practicing lawyer ehh. We will have to start a fund so the first anti-retrovirals go to you, so you are well enough to work on the law suit for us.

 

[fla]

Wasn't there a big thread about historical ME and that actual ME sufferers are only a small subset of the people here. That thread was TL;DR but I'm confused about what to call what I have.

 

[*GG*]

Interesting thread. I was diagnosed with CFS not ME. I have quit using the ME/CFS combo, since I know they are not the same disease.

GG

 

[WillowJ]

Interesting thread. I was diagnosed with CFS not ME. I have quit using the ME/CFS combo, since I know they are not the same disease.

GG

U.S. doctors do not know how to diagnose ME, nor is there currently a diagnostic code for ME. The CDC wrote it out of the US's clinical modifications many years ago. So not having an ME diagnosis has no meaning as far as what disease you actually have.

If you have significant post-exertional relapse, muscle weakness, and neurological symptoms, there should be no trouble with you using "ME" if you want to.

There is no such thing as CFS. The case descriptions for CFS do not describe a disease which actually exists (and you can't create a disease by writing one, except in fiction). People diagnosed with CFS have ME, possibly a range of diseases similar to ME but not having an alternate diagnosis (but which should not, in any case, be called "CFS"), and a collection of other diseases such as POTS alone, a particularly long case of mono which will eventually resolve by itself, major depressive disorder, and other possibilities including undiagnosed Lupus, simple vitamin D deficiency, multiple sclerosis, rare diseases, myasthenia gravis, Ehlers-Danlos Syndrome, cancer alone, etc.

 

[jace]

Excellent explanation, WillowJ. I wanted to reply to ggingues' post, but I'm glad I was too foggy yesterday to put it into words, as you have done it far better (and more succinctly) than I could have.

Include in the etceteras hypothyroidism, and coeliac disease. I'm sure (as you know) there are many more diseases that go undiagnosed under the CFS umbrella.

 

[gregf]

Thread title change : August will be "Call it ME month".

Thread title change : August will be "Call it ME month".

We are repackaging this idea and having another go in August.

Watch this space.