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

I don't have insight into the workings of the CDC, but currently the CDC obviously only acknowledge 'CFS' as per Fukuda.
Of course, if we asking the CDC to recognise 'ME' as a separate disease, then that opens up the old can of worms re names and diagnostic criteria.
For item no. 18 to go forwards, we'll have to have some careful wording for it. It could be along the lines that the CDC should recognise that there is a distinct biomedical disease called 'ME', or something simple along those lines.

 

Thinking about what RIc wrote

I appreciate what you are saying in your post. But won't the approach you lay out also take time and allow patients to be harmed in the meantime. For instance, the 22 year old man who just became sick two weeks ago and doesn't yet know what is the matter is going to a doctor who is familiar with the toolkit and recommends exercise as the first course of treatment - "Get a gym membership". And in response to a report of a crash after exercise, "I can't tell you how important that it is that you continue to exercise.". And of course, the doctor may assume the first illness to rule out is a mental illness, so "Off to the psychiatrist". Incremental steps could be important to protect patients in the interim.

But does it really have to be one or the other? Why not advocate for the scientific rigor and moral argument you ask for and also ask for the incremental steps to move us forward in parallel?

 

Interesting... I think it's worth pushing for these things, even if it only means that the CDC sits up and takes notice of them... If all ME/CFS organisations and professionals got behind the CCC/ICC, then maybe there might be some movement from the CDC. But even if the CDC doesn't officially recognise the CCC or ICC, I don't think that should stop them being used in all government funded research.

Is there a new suggestion in there Tina?

 

We could use item no. 1 as it is, and then add 'or' which then goes on to ask them to update their information to explain what you've said in your post...
Please suggest the wording Alex, if you can come up with something.

 

Now I'm going to read your short post, rlc


(I'm only joking about it's length - I appreciate everything you have to say)

 

rlc, before I read your post, I agree with everything Mary has said here... I think we should consider incorporating both your approach (asking for immediate and total change to the whole system) (i.e. explaining the ideal system that we'd like to see in place) alongside the approach that others are suggesting (advocating for incremental changes in the right direction, with the medium-term goal of an ideal situation)...

Mary makes a very good case for advocating immediate appropriate incremental changes that would immediately improve people's lives.

In fact, your approach could be very detrimental for patients because until we get a total transformation of the system, then, using your approach, things would stay exactly the same as they are now, thus leading to unnecessary short-term suffering. I don't think it's wise or safe to assume that we are going to get the sort of transformation you are looking for in the foreseeable future. In an ideal world, we would, but it isn't an ideal world.

So we could explain the ideal situation that you/we want to see (your approach), alongside laying out what we consider to be necessary short-term changes (which many of us feel is the only realistic option to make short-term or long-term change.)

What d'ya think about this approach?


Edit: Basically we have a difference of opinion about how best to make change in the quickest and most effective way possible. We aren't advocating incremental changes because that's all we want to see. It's because that's the way we think we are going to get the quickest and most effective changes, with the long-term goal of transforming the system. In order to get the changes that you are advocating for, we would need congressional bills, and the president's office would have to be involved, as you are talking about changing the entire US system (The CDC and other govt. bodies have pre-defined roles, and are legislated for.) It's a fine aim, to aim for an overhaul of the system, but, I'm convinced that you would need more than a few thousand active ME patients (if there are that many involved in advocacy/activism/campaign work) to have enough influence to effect that sort of change. So the aim of people like me, is to push for things that we think we realistically might be able to change in the short-term, with the medium-term goal of transforming the system.

So I'm just explaining the approach of people pushing for incremental change. Like I said, above, we can incorporate both approaches in order for maximum effect, so please consider what i've said.

 

I understand where you are coming from. I hope you also understand my approach? I have similar aims, but a different method for getting there, as per my previous post.

Agreed. We will end up with just a few suggestions, but we need to start off with all the ideas on the table.

I don't agree that that would necessarily create a pure cohort. We can only determine that by further research. But I agree that it would be the purest cohort possible without understanding the disease further, and without using biomarkers.

None of us seem to disagree about using the purest cohorts possible for research.

rlc, we do understand where you are coming from... we mainly disagree about process.

Well, currently it would throw those people under the bus, because they would be left without a diagnosis if Fukuda was scrapped, because of the situation that you have been explaining about a lack of rigorous diagnosis.
But I understand your point, and where you are coming from. You don't want to see Fukuda used because it is meaningless and doesn't diagnose a disease.

As for the ICC, it's the only thing we've got beyond fukuda and CCC, and time will tell whether it's a meaningful criteria. Only research can test it. But from what you've been saying, you would be happy with the ICC, if it included good enough exclusion criteria for differential diagnoses. So could we push for both ICC and for systematic differential diagnoses?

My answer to that is that a more 'exclusive' set of criteria based on our current understanding of ME, is better than nothing. I can't see how nothing could possibly be better than using the ICC.

Yes, I'm all for advocating that. It could specifically be advocated for a CDC research cohort. I think that would be a good idea. But also, yes, to advocate for all patients to get that sort of screening.

Yep, excellent idea.

Yes, go for it. Give me the text please.

I totally disagree with most of that, but I accept that's your point of view.
My point of view is that the ICC are better than nothing. Simple as that. And at the moment, all we've got is Fukuda.
So the ICC can be an immediate improvement, whereas your approach will take years to implement.
So I think we should advocate for both, side by side.

Fine words indeed. It you can organise the whole community, then go for it.

It's interesting to read your election plans, but we are only looking at suggestions for the CFSAC on this thread.

Yes, I think I agree with all of those points. I can't speak for others though.

I think most of us would agree that the CDC has failed us.

_________________________________________________________________________________

deep breath... continue...

 

We are only dealing with the CFSAC in this process, rlc. But I'll read your points.

I thought we'd already agreed on that. I was waiting for your wording.
We need (preferably short) proposals from you that we can ask everyone to give opinions on.

I don't know what you mean by 'protection'. But this seems like an extension of point 1.

I like the idea, but I think it's a bit complex for most us to put into words, without considerable effort. If you can create some text that could be presented, then everyone can consider your suggestion.

Well, that's assuming that your proposals for a 'pure' ME cohort is accepted, otherwise another department will just continue the CDC's work. Sure, we can suggest that the responsibility for ME is moved to another dept., but again, that will involve congress.

_______________________________________________________________________________________

deep breath... continue...

 

rlc, if you have a proposal for the CFSAC, then we need text to present.

we need text to present.

we need text to present

We need text to present.

 

Like I said, they have to start with a definition. At least a definition for CFS. Because a patient has to, at least, be suffering from prolonged fatigue to start with, and in many people's opinion would need to have the symptom of post exertional malaise to get a diagnosis.

I understand your passion, and most of your points of view, but I ask you to consider the proposals that I laid out earlier.
We can tackle the core issues, and advocate systemic change, whilst laying out short-term incremental beneficial changes at the same time.

 

rlc, I really appreciate your input, but I'm not going to read another long post like that.
I'm only going to read short succinct points from now onwards.
You've now made your interesting and helpful opinions very clear, repeatedly, so there's no need to repeat them again, in terms of this process that we are engaged with.
And all I am looking for now, is engagement in this specific process with the CFSAC, so I'm not engaging in other discussions.
If you don't think engaging with the CFSAC is adequate, then I understand that, but that's all I am discussing in this thread. Others are free to engage with you on any topic, of course..
Unfortunately, I can't use any of your previous post in this project, because you haven't given me any specific text to put forward as a proposal, and I'm not going to write out extremely complex policy proposals for you.
So if you want to engage in the process, please respond to my previous questions, and please respond to my earlier questions that I put to you regarding your initial feedback.
Other than that, please provide specific & itemised text and wording to propose, that the forum can comment on.
It doesn't have to be scientifically worded at this early stage, but it does have to be specific.
I'm leaving the list as it is until I have further feedback from you.

 

rlc, I don't agree with your opinions about the ICC. There is a lot of evidence available about physiological abnormalities in ME patients. Many people recognise that delayed and prolonged post exertional malaise is a cardinal symptom of ME, that is possibly unique to ME. So this is possibly a very effective way of determining an 'ME' cohort.

I also don't agree with your method of diagnosing 'ME' patients: If a patient doesn't have post-exertional malaise, even after all other illnesses have been ruled out, then many would say that that patient does not have 'ME'. Not everyone would say that, but I think most would, as that is the cardinal symptom. Specifially: delayed and prolonged post exertional malaise, or 'PENE'.

So I think that your approach, as I currently understand it, is missing that important element, and also ignores some of the other important symptoms that can define ME, and ignores a lot of the very good research that has been carried out.

I personally think that a good diagnostic criteria can define a good ME cohort, as far as we understand the disease or diseases, but I don't see anything wrong with a rigorous differential diagnosis system.

But I'm certainly in favour of using the ICC as a starting point for research, and then advocating that all other potential differential diagnoses should be systematically processed for each patient, and that the CDC should provide systematic guidelines.

I also like your idea of getting a project carried out with 400 patients, and processing them using a standardised approach to differential diagnosis. That proposal needs to be written up so we can all consider it.

Succinct feedback please. Remember that I'm not reading another long post. And I just need specific proposals for recommendations, not further explanations of your opinions, except to respond to what I've asked you, please.

Please keep in mind that any proposals you come up with, will need to incorporate the existing proposals, and other people's opinions, otherwise they are likely to get rejected, as some of us don't agree with your specific approach to our shared common goals.

Please also list which items you would absolutely strike out, and which can be accommodated in our consensual approach, if we come up with careful wording that is acceptable to you and incorporates your views.

For example, to incorporate both approaches, we could say something along the lines of:
"The CDC should produce standardised guidelines to systematically exclude all differential diagnoses from CFS, in order to exclude all patients with other conditions. In the mean time, the CCC and ICC should be used in all research."

Would that, or something similar, be acceptable to you?

 

To all folk, I can't write out suggestions for people. I can only write my own. So I'm looking for specific suggestions, or specific alternative (rewritten) suggestions. And all objections are still welcome. All input welcome.

 

I'll have to look up what the response was from HHS on this. CDC doesn't think it created a separate "empirical" definition, so these discussions tend to be circular.

There's no harm in asking for this, especially because I don't think they specified which definition. But see below for my thoughts on repetitive recommendations.

Again, see below.

One of the reasons that the CFSAC has 65 recommendations (plus those from the last meeting) is that they repeat themselves. Recommendations around centers of excellence and the CDC are repeated at least twice. On the one hand, this emphasizes how important those points are - and I think this is why they have repeated themselves (at least some of the time). On the other hand, it clutters up the overall chart and makes it look like they don't remember what they do from meeting to meeting. And of course the real problem is that HHS has not responded to some of these recommendations or has given non-response responses. So I have mixed feelings about asking them to repeat recommendations, or repeat them with tweaks. Without addressing the fundamental problems of HHS responses and consistency between meetings, then repetitive recommendations probably won't accomplish much.

 

I completely agree. The real problem is what I talked about in my testimony: HHS either doesn't respond at all or gives non-response responses. I'm working on cataloging these responses and putting together an overall summary report, so that might help highlight the real problem.

The other tidbit from the meeting was Dr. Lee's comment that the ex officios had drafted something on how the Secretary responds to the recommendations, and that the memo was in clearance. She said she hoped to share it with the committee soon. This document will be so critical to our overall understanding of the process (or lack thereof?) in how HHS looks at and responds to these recommendations. Also on my to do list is an examination of how HHS utilizes and responds to other FACA committees. This may be instructive as well.

 

The CDC does have a statement on ME, Bob. Had my computer not died a few months ago, I'd be able to produce it. I was hoping that ric might respond to my request, as he has referred to it in previous discussions. For the moment though, I don't have the computer savvy or the strength to retrieve the document on my own.

 

This is a great find, Tina. I think you are right that the IACFS/ME does not have the same credibility in CDC's eyes that the ACR does. Does anyone have time to look into what federal regulations might apply to the CFSAC's recommendation that CDC adopt the Primer? Maybe it's not as cut and dry as the ex officios made it sound.

The CFSAC has previously requested a Surgeon General letter to go out to public health agencies on CFS. My recollection is that the Surgeon General's office said they couldn't do anything without an assessment from AHRQ, and the recommendation to get that assessment from AHRQ is stalled. My personal interpretation of the definition discussion was that CFSAC could endorse a plan or process that included the professional orgs, and that HHS could then pursue that (although it was not clear through which agency). What drove me nuts about that discussion was that no one challenged Dr. Lee by asking, "If we endorse a process to clarify the definition, is HHS committed to carrying it out?" It's a very important question because the pattern is HHS ignoring recommendations. Why should the CFSAC create and endorse a plan if HHS isn't going to carry it out?

 

OK, then shall we leave these items as they are until we move on to the stage of discussing which of the suggestions should be our priorities? Then we will have to strike out a large number of them anyway.
Or if you have strong opinions then just state which you want striking out.

 

Ember, I don't have any insight into the workings of the CDC. (I tend to focus on UK stuff.)
So someone will have to come up with some wording if we want that item to go forwards.

 

I'm certain that would be very useful for the CFSAC members themselves. The new members probably don't have a clue what's been recommended in the past.

I was under the impression that Koh (am I getting this name correct?) has agreed to officially respond to all future CFSAC recommendations.
Did I understand this correctly?