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

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I was taking more licence than I should have, Mary, when Bob wrote that suggestions don't have to be well crafted/worded at this stage. I knew “the CDC list of diseases” wasn't up to the job. But I can't quickly find the CDC statement on myalgic encephalomyelitis. ME isn't on their website A-Z index, so that's my initial reference. Perhaps someone who remembers our previous discussions about the CDC's position on ME can help me out.

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.
 

medfeb

Senior Member
Messages
491
Thinking about what RIc wrote
The first goal of advocacy MUST be to completely solve the problem as quickly as possible! People are dying!!! For people like you and I whose health is reasonably stable, we can accept waiting five or ten more years for this problem to be solved it will be unpleasant, but it is doable, for thousands of other people this kind of time frame will cost them their lives, both people with ME and people who have slowly progressing un diagnosed diseases who have wrongly been diagnosed with CFS.

So we need to solve this problem as quickly as possible, if we agree to a slow interim step approach, we are condemning people to death, sorry if this sounds full on, but it is the reality of the situation. And I cannot in all conscience accept a plan that will kill thousands of people.

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?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Jumping back in. While it does seem the government ex-officios said no to anything the CDC did not come up with, I notice that for fibromyalgia, they are using the American College of Rheumatologists diagnostic criteria on their website: http://www.cdc.gov/arthritis/basics/fibromyalgia.htm So in that case, they adopted for the website the criteria developed by an outside association.

Again, we have a double standard, something mentioned in PANDORA's testimony.

So, really, does the ICC scientists carry the same credibility? Likely not. Would the IACFS/ME if they endorsed CCC, ME-ICC or any of them? I don't know. Something in my gut tells me the CDC would not accept something from the IACFS/ME as readily as they would from ACR.

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.

The FDA lady made suggestions on how to get our illness out of the "fringe."

While the CFSAC cannot put on an education project, seemingly, from what Dr. Nancy Lee was saying, they could recommend one to educate the leaders of professional orgs, such as the AMA and others. (This was an idea discussed during the definition topic.) What agency in the DHHS would do that? I don't know. I'm sure Jennie would know. But, that would be a good thing, I would think, as long as the CDC toolkit is not used.

Tina

Is there a new suggestion in there Tina? :)
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
1. Promotion of CBT and GET as therapies for CFS patients should be removed from CDC literature, toolkit and website.

We can't expand this much to remove most of the poor studies on CFS (and not ME) on the CDC site. The site is to promote CDC research. Its more about getting them to editorialize it to put the old research in modern perspective I suspect. CBT/GET is a reality though. I think rewriting it to show what the research actually demonstrates rather than the overblown claims would be better than scrapping it. Like a minority of vaguely defined patients improve a little, and the downside has been largely ignored. Most patients have no functional improvement, and some studies show there is a decline in functional capacity. It would be better if they could come out against CBT/GET but that might be too much to hope for.

Bye, Alex

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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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?

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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Hi Bob, I’ll try and state my view as clearly as I can, but first I will try and explain a few things that should hopefully make where I’m coming from a bit clearer, so bare with me.

The first goal of advocacy MUST be to completely solve the problem as quickly as possible! People are dying!!! For people like you and I whose health is reasonably stable, we can accept waiting five or ten more years for this problem to be solved it will be unpleasant, but it is doable, for thousands of other people this kind of time frame will cost them their lives, both people with ME and people who have slowly progressing un diagnosed diseases who have wrongly been diagnosed with CFS.

So we need to solve this problem as quickly as possible, if we agree to a slow interim step approach, we are condemning people to death, sorry if this sounds full on, but it is the reality of the situation. And I cannot in all conscience accept a plan that will kill thousands of people.

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.


For advocacy to work, the goals have to be simple to understand, hit straight at the heart of the matter, and there can only be a small number of goals, or focus and effort will be scattered and very little will be achieved.

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



Things that need to be clearly understood before we start are that ME is a disease that has a certain set of symptoms that is not any of the other known diseases that can cause these symptoms! This is the definition of ME! Long term sick with a variety of disabling symptoms that are not caused by any other known diseases.

So when I say a (pure cohort) I mean people who have been tested for all the other known diseases that can cause these symptoms and don’t have any of them. But are still sick with these kinds of symptoms. That is a pure cohort, if we have a pure cohort there will be nobody with other diseases in the research messing up the results, then we can make progress!

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.



So the only way to bust the CFS bubble is to, get people tested for every known disease so that we are left with a pure cohort, and then to research this pure cohort to find out what is going on and find the physical anomalies, when the physical anomalies are found these patients will therefore not have CFS, because CFS patients can’t have Physical anomalies, so it must be another disease, which can be called ME until such time as a new name is invented based on the scientific evidence. When this is done it will prove that CFS has been made up of a large number of people with known diseases that have wrongly been diagnosed as CFS and physically sick people with ME and the myth of CFS will be busted once and for all.

This is exactly what Dr Byron Hyde has done, but because his work hasn’t been scientifically replicated, the likes of the CDC just ignore his work.

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



I’d like to take the time to explain how all diseases become recognized as scientific facts, because it may help people understand where I’m coming from.

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




All diseases start with working doctors discovering something new and previously unrecorded in some patients, they then report these finding to higher authorities for it to be investigated, This is step one!

Then the researchers gather patients with this previously unknown condition and study them, they make sure that the patients don’t have any other known diseases and the doctors haven’t stuffed up and are reporting a disease that is already known, this is step two.

The research is then collated and studied using pure science and replicated studies, this is step three.

If the scientific evidence shows that it is a new disease, it is then accepted as a scientific fact based on the replicated scientific research, definitions are written and diagnostic tests and cures looked for. This is step four.

Step five is, tests and treatments for the disease are found, and the medical community starts using these. End of problem!

When it comes to CFS definitions and the likes of the ICC, they are all only based on step one, the ICC and other definitions are the opinions of a small group of clinicians, which have not been scientifically independently replicated, so they are not science they are opinions! Step two other independent researchers making sure that all other diseases have been ruled out has not been independently done, so we have no proof that the writers of the ICC have done this properly, we can’t just assume this, because it is not science. The ICC tries to back up its claims by quoting research that has not been independently replicated, so therefore isn’t science! Which makes them look very unprofessional for doing this.

The reality is that all the definitions are just a collection of meaningless symptoms that could be caused by a large number of diseases, with very bad instructions on how to rule out these other diseases, they don’t actually scientifically define anything!



The only ME definition we have that science agrees on is, ME is a disease that has a certain set of symptoms that is not any of the other known diseases that can cause these symptoms!

The reason why steps 2,3,4,5 have never happened is that the likes of the CDC and the UK government refuse to do it.

But for the ME community to act as if the likes of the ICC is science makes them look silly in the eyes of the medical and scientific community, which doesn’t help, Now I’m not saying that the ICC is wrong, I’m saying it is not proven science, which is a fact! If as Dr Klimas is saying it is possible that some ME patients don’t fit the strict criteria of the ICC turns out to be true, then using the ICC will effectively throw all those people under the bus of the oncoming changes to the DSM-5, which is not something I’m going to support!

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?



So because none of the definitions are based on the correct scientific process of a new disease coming into existence, and therefore there is a very good chance that they are all wrong! I propose that we do not support the use of any of them, why do we want to use incomplete science? Not only will it not solve the problems, it makes us look silly.

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.



What we should be asking for is for the correct scientific process to be done for the first time ever in this field, we need a pure cohort created by ruling out all other diseases, there is no point in arguing what the symptoms these people should have, because we haven’t had the pure science yet that proves what the symptoms are. All other diseases should be ruled out, leaving a group of long term sick who have symptoms along the lines mention in all the definitions.

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.


A group of about four hundred pure cohort patients are then split into four group of a hundred and tested for everything that has previously been found in these patients and anything else the researchers can think of, along the lines of how I described it to Floydguy. The tests in each four groups will be exactly the same so it is a replicated scientific study!

This information will then mean that we have done steps 1, 2, 3, and 4 of creating a new disease, and a scientifically correct definition can be written that no one can argue with because it is pure science! Then based on this step 5 can be done!

Yep, excellent idea.

If we campaign for this to be done we have a high chance of success for the simple reason that it is based on the correct medical and scientific process of defining a new disease, the medical authorities and scientists who see are request, will respect us because we are showing a knowledgeable and scientifically valid way of fixing this problem, If the government refuses to do this and is therefore refusing to follow correct scientific process, then we can take it to the press and/or go legal on it!

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

If however we campaign for the ICC to be used we will fail, because it is just the opinions of a small group of clinicians that has not been scientifically replicated and therefore is not science, we will makes are selves look stupid in the eyes of the scientific community, who will immediately see that the ICC is not science, and hasn’t been done according to the correct scientific principles, also the doctors that have written the ICC are very much on the fringes of medicine, and are regarded by large sections of the medical community as being a bit nuts, and of having a habit of saying things are science with no replicated proof! Which is exactly what they have done in the ICC. We can’t go to the press and complain that the government won’t adopt the ICC, because they will ask their science advisers who will say the ICC is not science why do these people want it used, are they nuts? Again I’m not saying that the writers of the ICC are necessarily wrong in what they say, but that their work is not backed up by scientifically replicated studies so it carries very little weight in the medical and scientific world and can very easily be rejected, and the CDC have already made it clear that they will not be accepting it, and are planning to tinker with their existing definitions instead.

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.

If we are to campaign for anything we have to lose the Victim mentality immediately, we can’t keep being like weak little children going to the CDC with are begging bowl out saying please sir can we have some more, this is a losers mentality. We need a winner’s mentality; it is not a case of us attacking the beast (the CDC) with a sling shot. We need to wake up and realize that we are the beast; we are 4 million people plus 10-20 million friends and relatives, against the tiny little tin pot CDC CFS department, which most of the rest of the CDC doesn’t have any respect for!

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

If the US orgs can get organized and tell the politicians that they represent 20 million people who will vote against any party that doesn’t give them what they want, and if this want is reasonable so that the press can also be made aware of it and people will be outraged that US citizens are not getting basic human rights meet, and we are not asking for anything that is unscientific or outrageous. Then as the election is going to be very close, the politicians will give us what we want, which in reality isn’t very much, and won’t cost much money, Obama can give us complete testing to rule out all other disease in suspected CFS patients, funding for finding out what ME is, based on pure cohorts, and close the CDC CFS department and open one at the NIH with the stroke of a pen!!! He would be stupid not to, and risk losing the election!!! Are problem is that the politician are completely unaware that there is a problem, and that they could easily buy votes by giving us what we want!

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


So to see what we really think, could everyone answer to themselves, these questions based on what they think and want, not on what they believe is possible!

Are we all in agreement that we don’t want to be diagnosed with the psychiatric diagnosis CFS?

Are we all in agreement that everybody should be completely tested for every other disease that could possibly be causing their symptoms, and that this should be a basic human right in the most powerful country in the world?

Are we all in agreement that, ME is a disease that has a certain set of symptoms that is not any of the other known diseases that can cause these symptoms?

Are we all in agreement that ME should be properly researched and funding should be provided to do this?


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

Are we all in agreement that are best option is to have new research done along the lines that I have outlined, that will do the scientific steps 1, 2, 3, and 4 of creating a new disease, so we can then have a pure replicated scientific definition that the psyc lobby can’t argue with! Instead of promoting existing definitions that because they are not based on replicated science the psyc lobby can just ignore and continue on the way they have for the last 25 years?

Are we all in agreement that the CDC has shown an utter failure to do anything useful for the last 25 years and therefore should not be allowed to do CFS research or have a CFS department?

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

_________________________________________________________________________________

deep breath... continue...
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Ok bob here is what I think we should be campaigning for in its simplest form, and I’ll explain how after. This is not a list just to recommend to the CFSAC that has a long history of being very unhelpful and completely misunderstanding the situation. This is the plan for all advocacy! The first place it should be sent to is US politicians and the press.

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

1. A 100% complete differential diagnosis and testing list written in a medically structured way that is easy for the average doctor to use, must be written, and it must become compulsory for all patients to get this testing done.

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.

2. All patients that do not have a known disease found by this testing process (i.e. are in the ME group), will be given the full protection given to anyone with a serious physical medical condition. (This is to protect them from the DSM and psyc lobby. It doesn’t matter what this group is called it could be ME it could be disease X, but they must have this protection, until the science is done to find the physical nature of their suffering.)

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

3. Appropriate funding, facilities and scientists must be provided for research! This must start with a study that goes along these lines. It selects a pure cohort of say four hundred people, with all other diseases ruled out, divided into four equal groups who are studied at four different facilities. They will be asked what all their symptoms are, and examined, and will be tested for NMH, POTs etc, ability to handle exertion, lung function, have SPECT, PET, MRI scans etc, tested for cortisol production etc, immune status etc, basically everything that researchers have been saying that they are finding. All four groups will have exactly the same tests so it is a replicated study.

This will provide the scientifically replicated information, from which they will be able to create a scientific definition of what this disease is, (rather than the money being wasted in a random fashion on dumb projects like looking for childhood abuse in CFS patients that the CDC does.) when this is done steps 1-4 of creating a new disease will have been completed, funding must then be provided for step 5, finding cause and treatments.



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.


4. The CDC CFS department is closed, and a new one to do the research is created at the NIH, and that this new department will not be called a CFS department! (They will have to come up with a more appropriate name.)

The request for all of this to be done has to be backed up by the published research that shows the enormous cost to the US economy of all these people being sick, the cost in Georgia alone is estimated to be 1.6 billion dollars seehttp://www.resource-allocation.com/content/9/1/1/

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...
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
To achieve the first goal.

1. A 100% complete differential diagnosis and testing list written in a medically structured way that is easy for the average doctor to use, must be written, and it must become compulsory for all patients to get this testing done!!

The US orgs must demand that this is done, that a group of expert diagnosticians is set up to write the complete list, they must demand that the two doctors who have the most experience and success at finding the misdiagnosed in the CFS groups are included either directly or as consultants in the process, these two doctors are Drs Hyde and Mirza! The US orgs must demand that it becomes compulsory or they will be instructing the people they represent to vote against the government.

It would be a good idea before starting this process to start by getting someone like Dr Garcia to look at the information that I outlined that shows how bad the CDC testing is and for them to talk to Drs Hyde and Mirza to get more information. So the approach to the government is done by a doctor who has all the information, rather then it coming from medically unqualified people.

Because the US health system is largely private and insurance based the US government must pass a law to make it mandatory for all health providers to do this compulsory list of testing, the private sector cannot object to this because they are supposed to have been doing it anyway!! The good thing is that because the US system is largely private, the US government won’t be footing the bill for the extra testing, so will have no financial reasons to object to making it law.

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



2. All patients that do not have a known disease found by this testing process (i.e. are in the ME group), will be given the full protection given to anyone with a serious physical medical condition. (This is to protect them from the DSM and psyc lobby. It doesn’t matter what this group is called it could be ME it could be disease X, but they must have this protection, until the science is done to find the physical nature of their suffering.)

This is achieved by the US orgs demanding it backed by the treat of 20 million people voting against the government. And by the scientific evidence that we have that these people have been shown in numerous studies to have findable physical anomalies and therefore do not have the psychiatric disease CFS which does not have physical anomalies.

we need text to present.



3. Appropriate funding, facilities and scientists must be provided for research! This must start with a study that goes along these lines. It selects a pure cohort of say four hundred people, with all other diseases ruled out, divided into four equal groups who are studied at four different facilities. They will be asked what all their symptoms are, and examined, and will be tested for NMH, POTs etc, ability to handle exertion, lung function, have SPECT, PET, MRI scans etc, tested for cortisol production etc, immune status etc, basically everything that researchers have been saying that they are finding.

This will provide the scientifically replicated information, from which they will be able to create a scientific definition of what this disease is, (rather than the money being wasted in a random fashion on dumb projects like looking for childhood abuse in CFS patients that the CDC does.) when this is done steps 1-4 of creating a new disease will have been completed, funding must then be provided for step 5, finding cause and treatments.

This is achieved by the US orgs demanding it backed by the treat of 20 million people voting against the government. And by the scientific evidence that we have that these people have been shown in numerous studies to have findable physical anomalies and therefore it needs to be investigated properly with replicated studies, because they can’t have CFS because they have finable physical anomalies.

we need text to present



4. The CDC CFS department is closed, and a new one to do the research is created at the NIH, and that this new department will not be called a CFS department! (They will have to come up with a more appropriate name.)

This is achieved by the US orgs demanding it backed by the treat of 20 million people voting against the government. It would be wise if before this was done, some research was done by the US orgs to list the long history of CDC failures, and the deliberate ignoring of medical evidence. If someone like Tina is interested I can point them in the direction of quite a bit of this evidence.

Such as a senior writer of the first CDC CFS definition, admitting in a published article, that he, therefore the CDC new that patients at Tahoe had failed MRI scans before they invented CFS, and he refers to the Tahoe as an outbreak and describes it as similar to other outbreaks in the US going back to 1934 and uses the US name for ME, Epidemic Neuromyasthenia for all these outbreaks including Tahoe. So much for the CDC saying no physical anomalies and not contagious.

I can provide the article that shows that a senior ex CDC doctor called Dr Henderson told the CDC that Tahoe was Epidemic Neuromyasthenia (ME) and told them where to find all the literature on it.

I can provide articles written by the CDC that prove that the CDC read extensively the old literature on ME, which showed a rapidly spreading serious neurological illness that did have measurable physical anomalies, and instead invented a disease that they said was not contagious, and didn’t have physical anomalies.

There is the well documented fact that the CDC CFS department misappropriated millions of dollars for research.

The fact that in the last decade they have wasted millions of dollars on advertising their new disease CFS instead of researching it.

We have the fact that the CDCs list of diseases to rule out, and testing to do this is beyond woeful

That their much Heralded Wichita study was done without properly ruling out other disease guaranteeing mixed cohorts.

And all their so called research is based on mixed cohorts, because they don’t rule out all other diseases.

That the Fukuda definition was written mainly by psychiatrists.

That they promote psychiatric treatments for CFS patients such as CBT, and GET.

The not to insignificant matter of the CDC not being allowed to invent new diseases, and yet we have CFS??!!!

That research has shown that the Reeves definition wrongly diagnoses about 30% of people with depression with CFS.

And that the CDCs plan for the future is to compare the faulty Wichita study with the Faulty Fukuda definition etc, etc, etc.

With a little bit of effort it’s not going to be very hard to come up with enough evidence to back a request for a change to the NIH, based on the CDC proven history of achieving nothing of any use to anyone and wasting and misappropriating millions of dollars of government money!

It is far better for the research to be done by the NIH anyway because they have a far bigger budget and the facilities to do it. They are after allthe primary agency of the United States government responsible for biomedical and health-related research see http://en.wikipedia.org/wiki/National_Institutes_of_Health

We need text to present.


 

Bob

Senior Member
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Location
England (south coast)
RE the Norwegian researchers

“Well, they have to start with a definition, don't they, or they would not know who was an ME or CFS patient.
The Norwegian researchers do not rely on any definition as the final word as to who has ME, and nor should any researchers, the Norwegian researchers know that none of the definitions will guarantee pure cohorts, so they are fastidious about testing for all other possible diseases, because if they mistakenly include a patient with a different disease, there is a very high chance that they will kill the patient if they give them Rituximab.

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.




So that would be my plan, but for it to work we need leadership from the US orgs and a dramatic change in attitude amongst large amounts of the patient community, because they are about as defeatist as you can get. I will not support any slow incremental changes plan, or any plan that does not tackle the core issues, because it will lead to the death of thousands of people and I’m not having a bar of it.

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.
 

Bob

Senior Member
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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.
 

Bob

Senior Member
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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?
 

Bob

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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.
 

jspotila

Senior Member
Messages
1,099
9. The CDC should stop using the 'empirical' definition for research.​
Opppose: CFSAC already made this recommendation.

OK, that's the second objection. Deleted. But is a repeated suggestion or recommendation a waste of time? Wouldn't it emphasise how important it is?
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.

12. Invest research funds into finding a biomarker or biomarkers for ME.​
Oppose: CFSAC has recommended research into biomarkers, although this thread shows quite some disagreement over whether they've recommended it for ME.

Can we not suggest research into biomarkers using CCC and ICC?
(Will await your response before deleting)
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.

13. The CDC should develop a definition based on the biomedical model of illness.​
That the CDC creates a meaningful criteria based on patients with a biomedical illness, and to exclude pyschological or psychiatric illnesses from the definition.​
Oppose: CFSAC already passed a recommendation that the definition be clarified.

Can we not ask to get it re-recommend, based on more targeted wording re the wording in item 13?
(Will await your response before deleting)
Again, see below.

17. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), the CFSAC should re-issue recommendations that address current priorities in CFS policy in a clear and concise manner.

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.
 

jspotila

Senior Member
Messages
1,099
Playing devils advocate on this one - is it enough to recommend that they review all their previous recommendations and clean them up if the resultant recommendations are ignored or not taken seriously? Does this recommendation need to say more or is a separate recommendation needed?
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.
 

Ember

Senior Member
Messages
2,115
I don't have insight into the workings of the CDC, but currently the CDC obviously only acknowledge 'CFS' as per Fukuda.
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.
 

jspotila

Senior Member
Messages
1,099
Jumping back in. While it does seem the government ex-officios said no to anything the CDC did not come up with, I notice that for fibromyalgia, they are using the American College of Rheumatologists diagnostic criteria on their website: http://www.cdc.gov/arthritis/basics/fibromyalgia.htm So in that case, they adopted for the website the criteria developed by an outside association.

Again, we have a double standard, something mentioned in PANDORA's testimony.

So, really, does the ICC scientists carry the same credibility? Likely not. Would the IACFS/ME if they endorsed CCC, ME-ICC or any of them? I don't know. Something in my gut tells me the CDC would not accept something from the IACFS/ME as readily as they would from ACR.
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.

While the CFSAC cannot put on an education project, seemingly, from what Dr. Nancy Lee was saying, they could recommend one to educate the leaders of professional orgs, such as the AMA and others. (This was an idea discussed during the definition topic.) What agency in the DHHS would do that? I don't know. I'm sure Jennie would know. But, that would be a good thing, I would think, as long as the CDC toolkit is not used.
Tina
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?
 

Bob

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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.

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.
 

Bob

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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.

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.
 

Bob

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Location
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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.

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.

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.

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?