• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

First IOM meeting scheduled - Jan 27-28

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
The issue goes way beyond the horrible name CFS eg in England its often called ME.. and we know things are terrible in England. Simply changing name will never fix the issue we have.

I agree that simply changing the name, without more, will never fix our issues, but it will help somewhat, don't you agree? Since it won't fix all our problems by itself, we obviously need to do other things too, but I've never suggested that we only rely on name-change to fix our problems.

And it is the positive change that is most in our control and costs no money from us and relatively low effort to influence its change (by using the term ME and not "CFS" and asking other to also), so we might as well do it.
 

Ember

Senior Member
Messages
2,115
We will not leave atypical ME patients in the lurch. We are all in this together. We will all fight for atypical ME patients to get bona fide research!
I don't think that Fukuda without PEM should be considered 'atypical ME' since, imo, and I think there is consensus on this, the sine qua non of ME is PEM.
Are those CFS (Fukuda) patients who don't meet your definition of atypical ME to be left "in the lurch?"
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I agree that simply changing the name, without more, will never fix our issues, but it will help somewhat, don't you agree?

Yes I do agree with that some.. I think it would help others who arent in the medical profession stop putting just the fatigue thing onto us.. but on the other hand I do not think it would help much as far as drs etc go as they will just see as us CFS patients still but with just a new name. It see that as not doing much more then sticking a bandaide on a sore which just keeps bleeding.

And it is the positive change that is most in our control and costs no money from us and relatively low effort to influence its change (by using the term ME and not "CFS" and asking other to also), so we might as well do it.

That part about costing no money with the name change may not be be true. It would mean that our associations etc need to change their names and this due to new letter heads and I guess they may need to register new names etc etc may cost money.

I wish I thought things were as simple as just changing a name.

I too wonder what you propose for the "CFS" patients who dont have post exertional symptoms but still have more then "idopathic fatigue" which is just fatigue alone.. it would be wrong and cruel to say they have just have idopathic fatigue (sure many of those may be wrongly diagnosed but I wouldnt be suprised if there is a group of undiscovered illnesses out there in which people dont fit atypical ME (if going by just postexertional symptoms) but have more symptoms then idopathic fatigue.

The whole ME/CFS thing I see as hugely complex and hence why I dont think that non ME/CFS experts on things like the OMI panel is a good idea at all.
 

Delia

Senior Member
Messages
139
Location
Iowa
Hi WIllowJ

I understand it a little differently but I may have it wrong.

To me, it looks like that link to "ICD-9-CM Volume 2 Index entries containing back-references to 323.9" is actually a link to the alphabetic index of terms that are currently in use, not historical terms

ICD has two parts, the tabular listing which contains all the main terms and headings and the alphabetic index which contains additional terms. The alphabetic index is linked back to the tabular listing by code number.

Assuming I understand this correctly, when you click on that arrow, you are opening a portion of the alphabetic index and can see the rest of the terms associated with 323.9. One of those lines lists the terms "Encephalomyelitis (chronic) (granulomatous) (myalgic, benign)"

If you go to the NCHS site here, you can look at the alphabetic index for diseases for the most recent version of ICD-9-CM and will see these same terms at 323.9.

You are right that the code 323.9 is not just for ME. Its used by a number of other diseases also. This happens with other entries as well where a number of more specific terms point to a general term and all use the same code.

I will try to confirm whether I understand this correctly or not.

Of course, the point is moot if the docs are not using it.

I just gave this to my doctor today, to help me get the ME diagnosis, and the ability to bill it.

http://www.masscfids.org/resource-library/8-diagnosis/456

I hope I wasn't wrong in thinking it would help.

I would like to raise awareness so that people can know about this, if indeed it will help them.

I have the best doctor I could find in my doctor rich-medical school city: doctors who all treat cfs patients terribly and according to the CDC toolkit, if at all. She's been the most knowledgable I could find, but even she didn't know what the hell ME was.
 

Delia

Senior Member
Messages
139
Location
Iowa
I believe the term ME/CFS came about in 2003. I got sick in September 2005. I still can't find any doctors within 500 miles of me that even know the term ME. Or ME/CFS. 8 years after I got sick and ten years after they were put together. (Put together for imperfect reasons)

Is anyone helped medically by a diagnosis of CFS?

Is anyone helped getting support with a dx of CFS? It still doesn't help get social security in the US, even though legally it's been a coverable disability since 1999. It's still nearly impossible. And as far as I know, Social Security Administration standards/criteria have not been updated since then. But I can't speak for other countries.

Disability Insurance from employers already made a deal to only cover two years for CFS (if I recall correctly, I have bad brain, and an incredibly bad news day-my doctor is moving away. And I went through hell to find her)

We have a fight on two fronts: 1) lay people and that includes politicians and doctors! As well as family, friends, and general public.

And 2) the science.

Our first fight is the lay fight. The letter to the IoM by Gabby, I believe, iirc, said it best: even people closest to her did not fully realize the seriousness of her condition before these documentaries' (one or both? I forget) short videos came out and she could share them.

They contain our most powerful message.

The experts letter supports this message.

This is The message we need out FIRST.

The second fight is scientific, but we will never get to make those cases, for all of these concerns, because we will never stop, or bring outside questioning on the validity of the IoM report WITHOUT lay people support. Or even just the recognition that we can get their support, by those in power.

That's the biggest, most pressing harm.

By sticking with the messages that lay people understand, without devolving into arguing over the higher level concerns (that rightfully can only be addressed if we get non ME literate people on board to help us get some real science) we have a real shot.

We had a strong message.

Now we don't.

Can we figure out a way to deal with an imperfect message (to all of us) that very effectively gets the job done with lay people , does no real harm, gets us some respect for the seriousness of our conditions and is a message that can be clarified to be more specific as we move forward from step one?

To use a quote from Mad Men: there's a snake that can go weeks or months without anything to eat. He comes upon some prey and eats it all in one bite. It chokes him and he dies. The moral: one bite at a time.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Are those CFS (Fukuda) patients who don't meet your definition of atypical ME to be left "in the lurch?"

No. I said above:

having seen the dark side and not wanting it to happen to anyone else, some of us will advocate in some of our work- or spare-time for Idiopathic Chronic Fatigue patients to be adequately studied and sub-grouped;
 

Ember

Senior Member
Messages
2,115
No. I said above: "Some of us will advocate in some of our work- or spare-time for Idiopathic Chronic Fatigue patients to be adequately studied and sub-grouped."
Small comfort, I should think! When should CFS (Fukuda) patients who don't meet your definition of atypical ME expect to see results from such efforts?
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Some research by Leonard Jason and others found that medical students take CFS more seriously if it has a different name. They also take it more seriously if it has a new name and are told that it used to be called CFS. IOW, changing the name helps, regardless of whether it was previously called CFS.
 

Ember

Senior Member
Messages
2,115
Does Dr. Jason recommend exchanging a CFS diagnosis for a CF diagnosis? He's promoting an ME definition that characterizes post-extertional malaise as “prolonged restoration of muscle power following either mental or physical exertion” and excludes gradual onset patients:
Jason, Damrongvachiraphan et al. (2012) recently developed a consensus ME case definition influenced by some of the key ME theorists over the past few decades (Dowsett et al., 1990; Goudsmit et al., 2009; Hyde, 2007; Ramsay, 1988). The resulting case definition requires an individual to experience post-exertional malaise, at least one neurological symptom, and at least one autonomic symptom. Furthermore, the onset of the condition had to have been sudden (developing over one week or less). Jason, Brown, et al. (2012) found that a sample of individuals meeting these ME criteria and the Fukuda et al. criteria were more impaired and symptomatic than a sample of individuals who only met the Fukuda et al. criteria.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
But they aren't going against the experts letter. Even the experts knew not to drag this nomenclature into the argument at this point! That's what puts the ball into the HHS court immediately. Game over they won.

The peril is the scare tactics being used to draw a line in the sand on the nomenclature.

It is fighting the second round when we are ignoring round one which has to be won first in order to get to round two.

Chronic Fatigue Syndrome became a name specifically to define the ME outbreak! When Norway
Apologized to it's patients it apologized for chronic fatigue syndrome patients not ME. But ME advocates translated to what they wish for, not what it actually says!

99% of doctors and Americans have never heard of ME. We have to educate them over. By saying ME is a subset of CFS is madness. There's no such thing as CFS no matter how many studies were done. It's garbage.

By giving it any legitimacy it ensures that hundreds and thousands of people will continue to suffer from this travesty! Forever it seems as those who don't know what you know can't fly to DC they can't barely work and there are real class lines being formed that will crush this movement.

It hurts the great movement of people rising from their beds to fight! And shoots us in the foot preventing us from bringing more bodies to the cause because they do not even know about ME, PEM or the CCC or Anything!

It's like: this IOM has been Rosa Parks for this movement but now many members are changing it to light skinned blacks should sit up front. We don't give a shot about the darkies. (CFSers) who will be badly badly hurt, because they don't know about this! Leaving cfs as something real leaves them at the back of the bus. And does not help us light skinned ME-ers in any fu**ing way.

The great majority of people with MEcfs DON'T know what the smallest percentage do. There are hundreds of thousands fighting with their doctors who push them to exercise to have the doctor learn about GET because they think that will help them because regular exercise is killing them and their doctors are pushing the shit out of them and blaming them when they fail. Most Doctors don't even know about GET, ffs! And patients who don't know better think it makes sense, because at least it's not what they are being put through now.

That's how bad it is.

Here's how it has put me in peril right now:

Y'all pressured Jen Brea to change her video to say "ME is a subset of CFS" which is not what it said when I used it to finally educate my county caseworker this fall. He got injured and I have a new caseworker. So I went to send it this week and guess what? Now it puts doubt in their mind. more doubt I don't need. Well we dont knkw if she has ME, she looks like crazy-lazy CFS to me...

I need their help. I have no help and I'm bed bound!

It's not what her video said when I gave $25 out if my $630 month income.

I got in this to fight the IoM and win. Even tho I'm on the brink of homelessness. And need to be putting my time to save myself.

I know what I'm doing. I'm an experienced political strategist who has been very successful.

The only unsuccessful campaigns I've been a part of didn't listen to my strategy and did just what I said NOT to do. But it didn't matter to them-the losses truly didn't effect them as they already had what they needed. They could buy their way out of the consequences of failure. I can't.

This whole ME is a subset or whatever that leaves CFS as legitimate is the losing strategy and it stinks to high hell.

PS: cfs came from ThecUS and it has to be killed in the US by US strategies and means. Yes it was exported and done and will continue to do great damage internationally. But we have to kill it using US strategy.

I've just started reading from the first post and made it this far. You've pretty much expressed what I've been thinking as I read.

There really is no such thing as CFS. There is chronic fatigue as a symptom that can be experienced by a variety of illness sufferers (sorry, clumsy way of saying that). But it is most definitely NOT a syndrome by itself as the only symptom or more ridiculously with added symptoms. It just makes no sense.

I'm not sure that the term ME correctly defines what I have clinically that's making me ill but until research clears this up it will have to do.
 

medfeb

Senior Member
Messages
491
ember said:
Does Dr. Jason recommend exchanging a CFS diagnosis for a CF diagnosis? He's promoting an ME definition thatcharacterizes post-extertional malaise as “prolonged restoration of muscle power following either mental or physical exertion” and excludes gradual onset patients:

Ember
I don't see anybody recommending exchanging a CFS diagnosis for a CF diagnosis or throwing all the "CFS", non-PEM patients under the bus. The point that I hear people saying is that the various "CFS" criteria collectively include a diverse set of conditions. This has been proven over and over. Scientists can not make progress studying a cohort of patients whose single shared criteria is chronic fatigue and whether their condition has a medical explanation. That's what the collective "CFS" criteria do and it hurts every patient - no matter what their condition.

At the May CFSAC, Dr. Fletcher described this situation as it impacts patients who meet CCC but it applies to all the other patients that get swept up in CFS
" to do the research [to find biomarkers], we have to be able to identify patient populations that are the same. We need these complex case definitions [CCC, ME-ICC] now, not in two years or four years. With those tools we can compare one group to another. That’s why I’m really interested in case definitions. Fukuda’s not going to do it."

Note the context of her calling CCC and ME-ICC as complex was because someone, I think Dr. Lee, had said the CCC was too complex for doctors to use.
 

Ember

Senior Member
Messages
2,115
I don't see anybody recommending exchanging a CFS diagnosis for a CF diagnosis or throwing all the "CFS", non-PEM patients under the bus.

For CFS (Fukuda) patients who don't satisfy an atypical ME diagnosis, what consequence do you see arising from your position: “As a clinical entity, 'CFS' needs to go?” With neither an ME nor a CFS diagnosis available to them, won't they be diagnosed with CF instead, thus finding their current CFS diagnosis exchanged for a CF diagnosis?

The International Consensus Panel writes, “Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies.” How long do you expect such patients to wait for more favourable treatment?
 

Nielk

Senior Member
Messages
6,970
I've just started reading from the first post and made it this far. You've pretty much expressed what I've been thinking as I read.

There really is no such thing as CFS. There is chronic fatigue as a symptom that can be experienced by a variety of illness sufferers (sorry, clumsy way of saying that). But it is most definitely NOT a syndrome by itself as the only symptom or more ridiculously with added symptoms. It just makes no sense.

I'm not sure that the term ME correctly defines what I have clinically that's making me ill but until research clears this up it will have to do.

The history of chronic fatigue syndrome shows that it's name was created by the CDC in 1988 following their 'study' of the Lake Tahoe outbreak. The disease was first known as 'chronic ebv'. But, when the CDC representatives did not see any evidence for that, they decided to name it CFS.

Therefore, I don't think that it is accurate to say that CFS does not exist. The outbreak there showed a disease pattern. The CDC wanted to whitewash it so they gave it the ridiculous name CFS and then they proceeded to describe it in ridiculous vague terms. What the CDC did to this disease is a travesty. Do we need a name change? Absolutely! But it doesn't mean that a serious disease does not exist. It does - it just has a ridiculous name and is currently totally misrepresented by our government........25 years later still.
 

Delia

Senior Member
Messages
139
Location
Iowa
For CFS (Fukuda) patients who don't satisfy an atypical ME diagnosis, what consequence do you see arising from your position: “As a clinical entity, 'CFS' needs to go?” With neither an ME nor a CFS diagnosis available to them, won't they be diagnosed with CF instead, thus finding their current CFS diagnosis exchanged for a CF diagnosis?

The International Consensus Panel writes, “Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies.” How long do you expect such patients to wait for more favourable treatment?

Ember,

With all due respect, what CFS patient receives favorable treatment now?

And I have to reiterate the difference between an advocacy/activist strategy to get to the table: a REAL table where all these differences can be sorted out with scientific integrity, we first need an activist strategy that is working. That works.


Otherwise we're just rearranging deck chairs on the Titanic, by arguing about second tier concerns when first tier concerns have not been prioritized. And actions decided.

I respect you tremendously, I have since I've gotten on the forum. In fact, I would want you 100% on the round two team. You have so much knowledge that will be imperative when we turn that corner.

I am operating at a different stage in the game: the part that gets people like you to round two.

It's been said from the beginning: nothing short of an Act-Up type response will help us.

(We don't have to throw blood or do what they did:we just need a strong organization, and a relatable message, and then a plan of action(s)

I can help with that. This is my wheelhouse. What you know, is not my wheelhouse and and I readily admit this. I have since day one. All of you wonderful, knowledgable advocates!

You would never want me to make the science and history arguments.

Another way to put it: most elected officials or organizations have "policy wonks" that know all the indepth information. But the messages are turned into laymans terms and the messenger:the elected official or face of an organization is the person who connects well with people and with a relatable message.

There are exceptions: Bill Clinton, for example is both a wonk and a messenger. (I'm not putting a value on him, just describing)

I'm an organizer. I'm a message person. You would want me (or someone like me) to help create an organizational structure for a movement, you would me want me for outreach and grassroots organizing, you'd want me to help create a message that connects to lay people.

To move forward we have to deal with tier one or round one concerns.

We have to find where to draw lines in the sand with each other and where not to.

In the civil rights movement that was nonviolence. That was non negotiable. I don't know if they had much else.

But we have made tons of lines in the sand with each other, and it's more damaging to us than the CAA or the IoM.

We have to be able to live with imperfection.

The Montgomery Bus boycott went on for about a year, iirc. Did that get all that they needed? Did it articulate all the needs of the Civil Rights Movement? Not at all. It was round one.


Do you want a movement?
 
Last edited:

Delia

Senior Member
Messages
139
Location
Iowa
The history of chronic fatigue syndrome shows that it's name was created by the CDC in 1988 following their 'study' of the Lake Tahoe outbreak. The disease was first known as 'chronic ebv'. But, when the CDC representatives did not see any evidence for that, they decided to name it CFS.

Therefore, I don't think that it is accurate to say that CFS does not exist. The outbreak there showed a disease pattern. The CDC wanted to whitewash it so they gave it the ridiculous name CFS and then they proceeded to describe it in ridiculous vague terms. What the CDC did to this disease is a travesty. Do we need a name change? Absolutely! But it doesn't mean that a serious disease does not exist. It does - it just has a ridiculous name and is currently totally misrepresented by our government........25 years later still.

I should clarify! What you say is exactly what I meant by not existing! By making up that name in the face of real ME they created something that doesn't really exist (CFS) to hide the illness (ME) that does exist!

I've been just, very badly I think, trying to say, if we say it's a subset, it only became a subset, because they allowed their name CFS (created in response to ME) to exist in order to gather other conditions over the years to give it legitimacy it doesn't deserve. And delay real medical, auxiliary and research help.

And they've gotten away with it for thirty years.

So much so, CFS is 1000 times more known than ME.
 

Delia

Senior Member
Messages
139
Location
Iowa
Some research by Leonard Jason and others found that medical students take CFS more seriously if it has a different name. They also take it more seriously if it has a new name and are told that it used to be called CFS. IOW, changing the name helps, regardless of whether it was previously called CFS.

Yes!

As do hairdressers, employers, co workers (fir those who can work, or could use to work) grocery store clerks, (to help with groceries to the car) police officers (I have had the police called on me when trying to buy a dress for a wedding because the store clerks thought I was drunk because of my balance and cognitive difficulties...

Family, friends, Everybody takes anything more seriously than Chronic Fatigue Syndrome.
 

Delia

Senior Member
Messages
139
Location
Iowa
Myalgic encephalomyelitis: it's a disease suffered by a subset of patients diagnosed each year with chronic fatigue syndrome.

Myalgic encephalomyelitis; it's a disease.:zippit:


I answered in another post, another person misunderstood me on this point. I must have not been explaining myself well.
 

Ember

Senior Member
Messages
2,115
My best strategy got lost in this whole ME as a subset of CFS argument.
With all due respect, what CFS patient receives favorable treatment now?

... we're just rearranging deck chairs on the Titanic, by arguing about second tier concerns when first tier concerns have not been prioritized....

We have to be able to live with imperfection.
You seem to be saying that “first-tier concerns” (which I take to be those of advocates opposing the IOM study) are in disarray. This thread, as I understand it, is addressing the “second-tier concerns” of those who have chosen to engage the IOM study.

Imperfection, to my mind, shouldn't involve undermining our experts, censoring Jen Brea (our communicator par excellence) or risking the welfare of others. Lobbying to have ME patients removed from the broader category of CFS, while pressing for a name change, might be seen as “imperfection.”

With all due respect, ME patients don't receive favourable treatment now, yet many covet that diagnosis while dismissing the cost should others unfortunately lose theirs.