Now that CFSAC's over, what should we do?

[Ember]

I thought that the discussion here is about finding a consensus on what we want the CFSAC to acheive.

If I'm wasting everyone's time and energy on my own issue, then I wonder if the Joint Request for Action shouldn't revise its request for:

a significant, sustained and coordinated commitment from DHHS to address the following four key priorities:

1. Resolve the definition, name and classification confusion....

If these issues aren't worth our time and energy, then why should they be worth theirs?

 

[Bob]

1. Resolve the definition, name and classification confusion

1. If these issues aren't worth our time and energy, then why should they be worth theirs?

If you want to see how complex this issue is, and why I don't think you will easily find consensus, then please read through the following thread:
Is it worth explaining the difference between ME and CFS to the public??
http://forums.phoenixrising.me/inde...erence-between-me-and-cfs-to-the-public.9591/

Only some of the issues are explored in detail, but the thread is still almost 500 posts long. There are many strongly opposed opinions expressed, but like I said, we did manage reach a consensus on a very narrow aspect of the overall subject.
If you think you can get the entire CFS community to agree with your approach to the issues you have raised, then good luck.

 

[Ember]

If you think you can get the entire CFS community to agree with your approach to the issues you have raised, then good luck.

I'm not seeking consensus so much as accuracy, Bob. I've suggested that we fact-check our documents to establish their consistency with findings in the scientific community.

You've written that documentation means that “for any assertions/opinions/statements you make, you just include a reference to any evidence (e.g. a scientific paper, article, set of diagnostic criteria, or a patient survey etc.), so that the reader knows that you haven't just plucked your information out of the air.”

But the reference that you cite has to actually support your assertion. When you're relying on the ICC to support your assertions/opinions/statements, but it doesn't, that's a problem, (particularly if you've directly claimed that it does). Then you're undermining your own goals and adding to the confusion.

 

[floydguy]

I'm not seeking consensus so much as accuracy, Bob. I've suggested that we fact-check our documents to establish their consistency with findings in the scientific community.

You've written that documentation means that “for any assertions/opinions/statements you make, you just include a reference to any evidence (e.g. a scientific paper, article, set of diagnostic criteria, or a patient survey etc.), so that the reader knows that you haven't just plucked your information out of the air.”

But the reference that you cite has to actually support your assertion. When you're relying on the ICC to support your assertions/opinions/statements, but it doesn't, that's a problem, (particularly if you've directly claimed that it does). Then you're undermining your own goals and adding to the confusion.

Ember I'd appreciate it if you'd lay out what you are trying to convey. You seem to have strong positions but I am not following at this point. Thanks.

 

[Ember]

Ember I'd appreciate it if you'd lay out what you are trying to convey.

Thank you for asking for clarification, floydguy. My response to the Joint Request for Action submission (post 82) was directed to Mary. In expressing my concerns, I tried to follow the logic of her document, so my own text probably seemed convoluted. Later (post 110 and 124), I expressed my personal fears concerning the positions we patients have taken, first in the presentation to the NCHS by the Coalition4ME/CFS and now in the Joint Request for Action. Those two requests claim, directly or implicitly, to be consistent with the ICC, yet they both contradict it.

I posted these only because I believe that the stakes are so high for us. I hope you'll understand if I say that this thread has taken its toll on me. I'd like to lay out what I meant to convey more clearly, and I'll make that attempt when I'm able.

Thanks for trying to follow.

 

[usedtobeperkytina]

Ember and Bob, there were some points that the orgs and / or individuals did not fully agree. So, the wording on some of the parts of the letter had to be broadened to get a consensus. And, as Bob said, that was the point of the letter, to find and speak unitedly on what we agree on. The more who give that same message on what we agree on, the more likely we can make a change on that point. But continually focusing on what we disagree on, what there isn't enough evidence to prove, will just continue to give government officials an excuse to do nothing.This is the whole point of coalitions and membership associations. Find where you agree and work to create change on those points. Don't become stagnant in continual disagreements. Keep focused on the big picture, the end goal.

By the way, we are asking if anyone else wants to sign it as an individual or as an org, please do so. Two more signed it just today. Email me if you want your name on it: ttidmore@pandoranet.info.

On definition and criteria. The researchers do not agree and orgs do not agree on which one should be used. Even those who are well-respected do not all agree. Even Klimas had a few negative comments on the ME-ICC. Jason's name is not on that one and he has a different formula. Nothing has a consensus now, either among researchers or clinicians. It's all just what is best we have at this time. Also, no one from government agency was involved in those, so without their participation, it is very unlikely they will accept any of them.

We don't all agree on the name that should be used. And, as evident here, we don't agree on whether it is one disease with a spectrum (my view) or two diseases (Ember's and ric's view). But that does not stop us from finding areas where we do agree.

We all (researchers and orgs on the letter) do agree that the confusion and the disagreement on this issue needs to be resolved for progress to be made. And, the DHHS is in a position to take the lead in resolving it. They and the agencies they oversee carry some credibility that individual researchers or groups of researchers don't, which is why there are so many criteria in use with no consensus.

Also, I do not agree with Ember's take on the message of the ME-ICC. She and I have discussed this before. And I have not engaged on that issue here as, again, it does not move the cause forward. We have flushed out both viewpoints and discussed evidence, and we still disagree. So, no point in beating a dead horse. But, I am sure I do agree with Ember on many things. And I would like to focus on those areas.

Here is what the letter said in reference to name and criteria and we all, 14 orgs and now 21 individuals agree to it:

Resolve the definition, name and classification confusion. The 1994 Fukuda definition and the 2005 Empirical definition have hopelessly blurred the distinctions between ME/CFS, depression and generalized chronic fatigue. (6,7). They are out of date and do not require the one symptom considered to be a hallmark of the disease: post exertional malaise. Use of this definition has contributed to research results that cannot be effectively compared across studies (6) and has contributed to inappropriate diagnosis and treatment.​

​

In October 2009, the CFS Advisory Committee (CFSAC) recommended that “DHHS recognize a need for and support a national effort to arrive at a consensus definition of CFS that is accurate, standardized and reflective of the true disease.” (7) We support that recommendation. It is long past time to subset Fukuda-defined patients and actively consider the existing 2003 Canadian Consensus Criteria (CCC) or 2011 International Consensus Criteria (ICC) for those patients who suffer from the hallmark post-exertional malaise.​

​

Beyond the definition, the name CFS has been confused with everyday tiredness and “chronic fatigue” ever since the CDC created it in 1988. Yet, many experienced clinicians and researchers recognize the equivalency or close similarity of ME and CFS based on the growth in scientific understanding and have adopted the term ME/CFS. All of DHHS should follow the NIH’s lead and adopt the term ME/CFS as recommended by the CFSAC in October 2010. (8)​

​

As it is now, if you say ME and CFS are different, then NIH is not doing any ME research and CDC is not doing any ME research and all American researchers using Fukuda is not doing any ME research and all their findings of immune abnormalities, brain abnormalities, etc. do not apply to ME patients.

Now, it seems that Ember and Bob can agree that CCC or ICC should be used as the criteria for those with post exertional malaise. And, to my knowledge, the CFSAC has never recommended that. So, that might be an area where those on Phoenix Rising can agree and also agree with those who signed the letter.

However, I'm sure that is not the only area where there is agreement. I bet we would all agree that the misspent NIH funding should be restored to funding into the disease.

Anyway, again, we are still taking signatures. See a copy of it here: http://www.coalition4mecfs.org/Joint_Letter.html

If you want your name on it, too, email me at ttidmore@pandoranet.info.

 

[Ember]

Also, I do not agree with Ember's take on the message of the ME-ICC. She and I have discussed this before.

In the light of recent articles, Tina, there's no need to rely on opinions concerning the ICC. I've quoted from Dr. Broderick's “Response to 'A controversial consensus'; By the International Consensus Panel,” published on December 30, 2011 (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full) and from Dr. Carruthers' “The New International Consensus Criteria for M.E.- content and context” published by the Journal of IiME in early June, 2012. Dr. Carruthers' article includes the text of his presentation at last September's conference (http://forums.phoenixrising.me/index.php?threads/invest-in-me-london-conference-2012.12701/page-3).

Both Dr. Broderick and Dr. Carruthers are authorized to speak for the ICC.

 

[rlc]

Hi Bob, RE If the CDC ... simply hired some expert diagnosticians to write a complete step by step guide for testing that included all the tests for all the conditions, and it was made mandatory for all patients to have this testing before having a CFS diagnosis, It would help hundreds of thousands of people get their correct diagnosis and treatment...

Maybe this could be a CFSAC recommendation?

i.e. that the CDC should draw up a diagnostic plan for potential CFS patients whereby all other possible illness are ruled out, along with the range of tests needed.

This is something that the CFSAC should definitely be recommending!!!!!! It has been needed for 25 years!!!!

The CDC testing recommendations have more holes in them then a block of Swiss cheese! No matter what people think ME is, or what definitions they believe should be used. The entire medical and scientific community is in agreement on the fact that ME, or if you want to call it CFS or CFIDS makes no real difference, is a disease of unknown origin that is NOT any of the other known diseases that can cause these kinds of symptoms!

But despite this fact, we have a situation where none of the guidelines, actually have testing recommendations that will rule out all other known diseases that will cause these kinds of symptoms. The main CFS definitions are woeful beyond belief, and often (bizarrely) contain instructions not to extensively test patients.

So although ME (CFS, CFIDS etc) is by definition a disease that can cause a certain set of symptoms, but is NOT any of the other known diseases that can cause these symptoms. Almost nobody unless they have large amounts of money to pay privately for testing, is getting tested properly to see if they have any of the other known illnesses that can cause these symptoms.

This has created a situation where large numbers of people have their correct diagnoses missed and are left to suffer and die wrongly diagnosed with CFS, these people are finding their way into research into ME and creating mixed cohorts which makes the results of the research meaningless, We also have the not often mentioned problem of co morbid conditions, an example of this is vitamin D deficiency, I have seen in the last year what must be over a hundred people on this site say that they have finally been tested for vitamin D deficiency they have started treating it and are noticing often substantial improvements in their health. These people have often gone for years sometimes decades without being tested for vitamin D, and have suffered needlessly because of this, so putting it bluntly they have been tortured due to the failure to recommend that all people with ME or CFS symptoms be tested for vitamin D, not a single one of the CFS definitions including the CCC recommend testing for vitamin D a truly disgraceful situation!

So what is needed is a complete step by step guide to ruling out every single known illness that can cause these kinds of symptoms, this will have to be written out in a way that is easy to understand and because some of the illnesses are rare and most average doctors don’t know about them, these illnesses and testing will have to be explained.

If you have a look at this page, it is a step by step instruction for the investigation of Fever of unknown origin http://www.aafp.org/afp/2003/1201/p2223.html that includes diagrams of how the testing procedure should be done. We need something like this for ME and CFS, if an organization such as the CDC wanted to it could by asking for input from outside diagnosticians create this in about two months at a very small cost. If it is made compulsory for everyone to get this testing, then not only will large numbers of people get their correct diagnoses found and get treated, we will also be left with a group of people who have the symptoms of ME but certainly do not have any of the other known conditions that can cause these symptoms. Which is what all medical and scientific sources agree that ME is in the first place, these people can then be studied and causes and cures found.

Personally I believe that as more research is done on these people, the name will more than likely be changed and ME may be split into several newly discovered illnesses, but for now the best option is for this group to be called ME, for the simple reason that ME is defined by the WHO as a physical neurological illness, which keeps these people out of the clutches of the changes to DSM-5, plus the name CFS does demean peoples suffering, if it is made compulsory for everyone with ME CFS type symptoms to have the extensive testing before they can be diagnosed with anything, then the people who have had known diseases missed will have them found and then the changes to the DSM won’t affect them.

No matter what symptoms are in any definition they are totally meaningless unless all other diseases are ruled out, because so many other conditions cause these symptoms.

I think that the endless debates about what to call the illness and what definition to use are missing the point and are not based on correct scientific process.

Everybody needs to work from the point that ME or whatever people want to call it is a disease of unknown origin that is NOT any of the other known diseases that can cause these kinds of symptoms!

Therefore everybody must be tested to make sure that they don’t have any other known diseases that can cause these symptoms, end result will be that we will be left with a group of people with a disease of unknown origin that is NOT any of the other known diseases that can cause these kinds of symptoms.

These people then can be studied by everyone, and everyone will be studying people who have an illness that is defiantly not any of the known ones that can cause these symptoms, no mixed cohorts, and then definitions and names can be come up with that accurately describe the illness, hopefully the study of these people will find tests that can be done to confirm diagnosis and definitions will no longer be of much importance!

Sounds logical and simple because it is, but it is not what has been done, people have not been getting properly tested to rule out other conditions, so mixed cohorts have been studied with the end result of utter confusion and endless suffering.

If advocacy can achieve getting all patients extensively tested to rule out all other diseases and maybe US orgs could get the CFSAC to act on this, and the left over group given a ME diagnosis to give them the protection of a WHO recognized physical disease and then these people are researched separately, every single person will be helped by doing this!

If we continue with people not being properly tested to rule out all other disease and continue to argue about names and definitions, we will achieve exactly what has been achieved in the last 25 years, absolutely nothing! Not a single person has had their suffering stopped by the approach used in the last 25 years. The definition of madness is said to be doing the same thing and expecting a different result, I suggest we stop doing the same thing as we have in the past.

I noticed Dr Ungers recent comments

“Hopefully by early next year we will have a publication that clearly explains the comparison of the standardized approach to applying the Fukuda definition [1994 definition] and the approach that we had used in the past in the Wichita studies. Everyone will find it very reassuring that the patient populations are quite comparable. I think that will relieve a lot of anxiety about what is going on.”

The Wichita studies are a perfect example of research into mixed cohorts and the failure to rule out all other known conditions that could cause the symptoms attributed to ME or CFS and why the CDC should not be allowed to write a new CFS definition, my personal opinion, is that the CDC has shown total incompetence in its entire history with this illness since 1988, and the CDC should be withdrawn from having anything to do with it and it should be handed over to some other government body.

All the information on the CDC Wichita project can be found here http://www.cdc.gov/cfs/programs/wichita-data-access/

As has just been discussed people need to be tested for all other known diseases and any people that are found to have known diseases should not be included in any study or the results will be on a mixed cohort and the results will be worthless. Did the CDC do this in the Wichita study? Absolutely not! The testing the CDC did can be found here http://www.cdc.gov/cfs/pdf/wichita-data-access/lab-tests-doc.pdf so what’s missing from the CDC testing well just of the top of my head, no testing for Celiac, no testing for B12 or folate deficiencies which often don’t show on CBC, no testing for Vitamin D, no testing whatsoever for iron levels, which means that all people with non anemic iron deficiency will have been missed, and all people with hemochromatosis will have been missed. No OGTT test for glucose so pre diabetes missed, no testing for sleep apnea, no testing for Lyme disease etc, etc. etc. So therefore as these conditions are all very common, the Wichita study will have to have been done on mixed cohorts and all the results are totally worthless and should be thrown away.

I think in regards to Dr Ungers comment “Everyone will find it very reassuring that the patient populations are quite comparable”

Yes the patient populations will be quite comparable; they will be mixed cohorts with large amounts of people with many known conditions, which is no help to anyone, I will not be finding this reassuring I will be finding it deeply disturbing!

And as for Dr Ungers comment “I think that will relieve a lot of anxiety about what is going on.”

It will not relieve any of my anxiety by the CDC yet again proving that they are incompetent and incapable of ruling out other conditions before testing people.

We have to stop this utter nonsense of not testing people to rule out other diseases properly and guaranteeing mixed cohorts in research and vast amounts of human suffering. The patient community and CFS orgs have to demand mandatory complete testing to rule out all possible diseases for everyone, before they are given a ME or CFS diagnosis if we are ever going to get out of this mess!

All the best

 

[usedtobeperkytina]

Yeah! I agree with ric on something.

I wonder, ric, do you see NMH as an effect in some patients with the disease or is it different disease? I mention that because Dr. Rowe, in his testimony, said that some of his patients have NMH but do not develop the symptoms of our disease. Yet, his research showed that many (forgot the figure) who have our disease also have one of the blood pressure problems: NMH, POTS or OI.

So, would you remove all those with blood pressure problems from the criteria for research?

On principle, I agree with you, especially for research. However, I know one advocate who complained that every time research or CDC finds a biological abnormality, they say the person then has another disease and not CFS (the term they use). So, they decided CFS is disease of symptoms with no biological abnormalities, and then any that are found excludes the person from having CFS. Have high EBV titers? Then you don't have CFS. You have chronic infection, the way they think.

And so it goes. But using that reasoning, then AIDS would never have been defined as the manifestations were pneumonia and cancers: rare ones, but still diseases that pre-existed AIDS and is separate from AIDS.

I think somewhere it says that if the person is treated for depression or thyroid problems and the symptoms persist, then they should be diagnosed with our disease. For example, I have low Vit. D. But I take Vit. D to bring it up and still have symptoms. Same for B12. I had low and got shots. Now take sublingal. Yet, I still have symptoms. I have low cortisol and it peaks at the wrong time. This is considered "adrenal fatigue." Yet I take cortisol and still have symptoms.

If this is a multi-system disease, then wouldn't there be many biological abnormalities, especially since the autonomic center, the unconscious control center, is largely affected. Also, because immune system is affected, then we would expect the infections to show up. We would see an array of malfunctions that may have other labels or diagnosis, yet, put together, the combination shows we have the multi-system dysfunction of our disease.

So, it does include tests for other things. I think the new primer gives details of what to test for to differentiate it from other diseases. I finally found the screening tests on CDC website: http://www.cdc.gov/cfs/toolkit/diagnosis.html I see some you mentioned not there.

Ember, I am not going to discuss that issue any more or bring up with other researchers have said. We will not solve it. I still look for areas where you and I agree.

 

[alex3619]

rlc in post 168 said "RE If the CDC ... simply hired some expert diagnosticians to write a complete step by step guide for testing that included all the tests for all the conditions, and it was made mandatory for all patients to have this testing before having a CFS diagnosis, It would help hundreds of thousands of people get their correct diagnosis and treatment"

In an ideal world this would be correct. Within the existing system I think that this will often fail. If you don't have cash to pay for the testing outside of insurance, many will simply not be tested. Furthermore in the UK once they strongly suspect CFS then all tests halt. No more testing. Insurances companies have resisted the kind of testing necessary for CFS since as far back as I can remember - even in places like Australia where basic medical care is free. Here these sorts of tests are frequently not free at all.

I wish this were not the case. It certainly isn't for those with money and a very knowledgeable doctor - but thats not everyone.

That does not mean that we don't need a new and up to date guide. It just means we cannot expect such a guide to solve too much of the problem.

Bye, Alex

 

[Ember]

Even Klimas had a few negative comments on the ME-ICC....

And, as evident here, we don't agree on whether it is one disease with a spectrum (my view) or two diseases (Ember's and ric's view).

Ember, I am not going to discuss that issue any more or bring up with other researchers have said. We will not solve it. I still look for areas where you and I agree.

Whether or not you choose to discuss any issue, Tina, you're not free to misrepresent the statements of others. Dr. Klimas is one of the authors who participated in the 100% consensus achieved by the ICC. It would be helpful if you would clarify your comments about her (or other researchers) with quotations.

I don't believe that I've expressed the view that ME and CFS are two diseases. Instead I wrote that Dr. Carruthers, in his presentation on the ICC, describes ME as a subset of CFS. And I quoted him:

While it has always been essential, it has now also become urgent to segregate the subset that we are calling ME more clearly, using the ME International Consensus Criteria, so that researchers can confirm/disconfirm their results using patients who have chronic fatigue of this clearly bio-pathological origin. Otherwise the all-inclusive umbrella of “CFS”, in ambiguating natural and psychosocial kinds of fatigue, will continue to dilute the results of any investigations and maintain the pervasive confusion resulting when biopathological kinds are mixed indiscriminately.

I wrote too that the ICC separates ME from CFS, stipulating that ME patients “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”

I did make the claim that some CFS patients may benefit from GET and that GET is contraindicated for ME patients. I base that claim on Dr. Carruthers' recent statement concerning PENE:

Research can be designed to study the pathogenetic details of this particular pattern and the many others that I expect will be uncovered as the ICC strategy is used more widely, with the assurance that results are not being continually diluted out by the 90% majority of CFSers who don’t have this kind of fatigue pattern.

Although I attempt to ground my statements in the literature as best I can, I don't feel constrained by any need for your agreement.

 

[Ember]

​

As it is now, if you say ME and CFS are different, then NIH is not doing any ME research and CDC is not doing any ME research and all American researchers using Fukuda is not doing any ME research and all their findings of immune abnormalities, brain abnormalities, etc. do not apply to ME patients.

By this logic, how can we afford to identify any subsets?

 

[Bob]

I don't believe that I've expressed the view that ME and CFS are two diseases. Instead I wrote that Dr. Carruthers, in his presentation on the ICC, describes ME as a subset of CFS. And I quoted him:

While it has always been essential, it has now also become urgent to segregate the subset that we are calling ME more clearly, using the ME International Consensus Criteria, so that researchers can confirm/disconfirm their results using patients who have chronic fatigue of this clearly bio-pathological origin. Otherwise the all-inclusive umbrella of “CFS”, in ambiguating natural and psychosocial kinds of fatigue, will continue to dilute the results of any investigations and maintain the pervasive confusion resulting when biopathological kinds are mixed indiscriminately.

Ember, if your position is that ICC 'ME' is a subset of Fukuda 'CFS', then that's quite different to saying that 'CFS' and 'ME' are two entirely different and separate conditions (which is what I thought you were saying - apologies if I got that wrong), and I agree that it different to saying that 'CFS' and 'ME' are exactly the same.

It's interesting that Carruthers describes ICC 'ME' as a subset of 'CFS', because some forum members would disagree with that, and say that ME is a 'distinct disease', and not a subset of CFS. I understand where they are coming from, but technically speaking, I think that ICC 'ME' has to be a subset of Fukuda 'CFS', because I think Fukuda emcompasses everybody who experiences chronic 'fatigue', chronic 'exhaustion', post exertional malaise and PENE.

So, if your position is that ICC 'ME' is a subset of Fukuda 'CFS', then that seems to be factually irrefutable to me, technically speaking. But from my experience on the forum, it is still controversial, and not everyone will agree with it. But I can't imagine that most people would have a problem with saying that ICC 'ME' is a subset of Fukuda 'CFS', as long as we are precise with our language and terminology.

 

[mezombie]

Please do consider the proposals in the context of how they would help or refine The Joint Request for ME/CFS Action. Feedback can be sent to mecfsaction@yahoo.net. Here is another link to the Request:

http://speakupaboutme.wordpress.com...-request-from-the-mecfs-community-for-action/

 

[Ember]

So, if your position is that ICC 'ME' is a subset of Fukuda 'CFS', then that seems to be factually irrefutable to me, technically speaking.

On this important point, I try not to assert a position myself, Bob, so much as to articulate what I know to be accurate. I've heard Dr. Carruthers use the following analogies to help clarify what the ICC is claiming about ME and CFS: migraine is a subset of headache; mycoplasma pneumonia is a subset of pneumonia.

We patients in our official documents, on the other hand, are claiming instead “the equivalency or close similarity of ME and CFS based on the growth in scientific understanding.” We are also using the terms CFS, ME and ME/CFS as if they were synonymous: “chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis or ME/CFS).”

I've raised these concerns about the Joint Request for Action, but also about the reclassification presentation made to the NCHS by the Coalition4ME/CFS. The Coalition implicated the ICC in its claim more directly.

 

[Bob]

On this issue, I try not to assert a position myself, Bob, so much as to articulate what I know to be accurate. I've heard Dr. Carruthers use the following analogies to help clarify what the ICC is claiming about ME and CFS: migraine is a subset of headache; mycoplasma pneumonia is a subset of pneumonia.

We patients in our official documents, on the other hand, are claiming instead “the equivalency or close similarity of ME and CFS based on the growth in scientific understanding.” We are also using the terms CFS, ME and ME/CFS as if they were synonymous: “chronic fatigue syndrome (CFS, known as myalgic encephalomyelitis or ME/CFS).”

I've raised these concerns about the Joint Request for Action, but also about the reclassification presentation made to the NCHS by the Coalition4ME/CFS. The Coalition implicated the ICC in its position more directly.

I just want to point out that Carruthers et al., do not have a monopoly on the name 'ME'.
The name 'ME' existed for decades before the ICC were created, and there are many different valid opinions about the use of the terms 'CFS' and 'ME'.
Some patients feel very strongly that patients diagnosed with Fukuda do not have 'ME' or 'CFS/ME', and I understand that position, even if I don't find it particularly helpful myself.
And some patients diagnosed with Fukuda feel very strongly that they do have 'ME'.
At the moment, strictly speaking, it is a fact that Fukuda diagnoses for 'CFS', and the CCC diagnoses for 'ME/CFS', and the ICC diagnoses for 'ME'.
(There are various other international diagnostic criteria as well, but let's stick to the definitions that are widely known in the USA.)
As ICC is a subset of Fukuda, then an ICC 'ME' patient could also be said to have Fukuda 'CFS'.
Therefore the term 'ME/CFS' doesn't seem too inappropriate to me, but I know that many would strongly disagree.
As you say, Ember, Carruthers et al., wanted to use the name 'ME' for the CCC, but changed it to ME/CFS at the last moment for convenience.
But the use of the term 'ME/CFS' for the CCC suggests that there is some sort of 'equivalency' or 'similarity' between CFS and ME, as the two names have been merged in one set of diagnostic criteria (CCC). And as we've discussed, ICC 'ME' is a subset of Fukuda 'CFS', further suggesting that there is 'similarity', if not 'equivalency'.

Yes, the ICC are intended to supercede the CCC, but the CCC are still in use, and have not been retracted.

It should also be noted that if somebody is diagnosed using the CCC, then they have 'ME/CFS', even if the authors originally intended it to be 'ME'.

So my point is that it's just not a straightforward or simple issue, and the ICC does not categorically answer all the questions.

Personally, I'd be happy with 'ME/CFS', as a starting point, until we are able to agree on something better, but not everyone will agree with that.

So where do we go from here?

I don't think the name issue can easily be resolved.

My suggestion is that when the CDC create their next set of criteria, that the CFS/ME community come up with a completely new name that avoids both 'ME' and 'CFS'. I can't see that happening though, because I think we'd have to put it to a vote to every CFS/ME patient and organisation!

 

[Bob]

OK, so there are 176 posts in this thread...
I'm prepared to go through some of the thread to extract the proposals or suggestions that have been made...
If there are any other volunteers, then we could divide up the posts between all the volunteers...
And then we can collate all of our suggestions
Then I'll make a single list from all of the suggestions, and we can add any more that we want to...
And then maybe we could discuss the suggestions, and see if we can all agree on any of them...
And then take it from there...
Maybe some sort of community project will come out of it?
Oh, and if you've made suggestions of your own, then maybe you could re-post them in a simple summary or list form, to make it easier.
(That's if anyone thinks this is a good idea? I don't want to tell everyone what we should be doing!)

Any volunteers willing to share the workload? We could start off going through one page each.

 

[Ember]

As you say, Ember, Carruthers et al., wanted to use the name 'ME' for the CCC, but changed it to CFS/ME at the last moment for convenience.
But the use of the term 'ME/CFS' for the CCC suggests that there is some sort of 'equivalency' or 'similarity' between CFS and ME, as the two names have been merged in one set of diagnostic criteria (CCC). And as we've discussed, ICC 'ME' is a subset of Fukuda 'CFS', further suggesting that there is 'similarity', if not 'equivalency'.

Thanks, Bob. I'm sure you meant to write that the CCC authors changed the name to ME/CFS rather than to CFS/ME. (The two terms have different implications; putting ME first implies more clearly a biological basis.)

You write, “But the use of the term 'ME/CFS' for the CCC suggests that there is some sort of 'equivalency' or 'similarity' between CFS and ME, as the two names have been merged in one set of diagnostic criteria (CCC).” That statement doesn't yet measure up to your suggestion that we be precise with our language and terminology. You wouldn't claim, for example, that mycoplasma pneumonia is 'equivalent' to other forms of pneumonia because its name includes the term 'pneumonia.' Consider the treatment differences, etc. The implications are enormous.

 

[Bob]

You write, “But the use of the term 'ME/CFS' for the CCC suggests that there is some sort of 'equivalency' or 'similarity' between CFS and ME, as the two names have been merged in one set of diagnostic criteria (CCC).” That statement doesn't yet measure up to your suggestion that we be precise with our language and terminology. You wouldn't claim, for example, that mycoplasma pneumonia is 'equivalent' to other forms of pneumonia because its name includes the term 'pneumonia.' Consider the treatment differences, etc. The implications are enormous.

Actually, I meant exactly what I said there because the use of the term 'ME/CFS' in the CCC, does indeed suggest that the two terms are equivalent, because CCC diagnoses for 'ME/CFS', placing the two terms next to each other, as having equivalent meaning. (I know that the authors originally intended the CCC to diagnose for 'ME', but that's not what they published.)

But, yes, there is lots of other evidence and many other opinions to consider. I'm just pointing out that I don't think you can look at the ICC and make a decision on names based solely on that, and what the authors of the ICC have said, when there is so much else to consider.

Thanks, Bob. I'm sure you meant to write that the CCC authors changed the name to ME/CFS rather than to CFS/ME. (The two terms have different implications; putting ME first implies more clearly a biological basis.)

Thank you... It's corrected now.

 

[usedtobeperkytina]

"When we accept more narrow definitions, including the ICC, we are throwing out vast number of patients," said Dr. Nancy Klimas, at the November CFSAC meeting:

(1:19 into the video)
"And it will have a very real impact on their ability to get disability and so on and so forth because they no longer meet the case definition."

Her overall point was that narrow definitions for research are needed but that does not mean that others don't have the same disease. But the same disease has two case definitions, one for research, to find the common denominator. And the other for clinical use for diagnosis.

"25% of the cases of AIDS did not meet the case definition," Klimas said. She said for research it was men 18-65 who had a very narrow list of infections. Though women and children were not used in the research did not mean they didn't have the same disease.

So, although the ME-ICC is intended for both clinical diagnosis and research, Klimas is saying there is real harm to using ME-ICC for clinical diagnosis.

Tina