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 pur
est 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.
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deep breath... continue...