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

[Ember]

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.

But the fact that the name suggests that the two terms are equivalent, Bob, doesn't justify the claim that the two terms are, in fact, equivalent. Mycoplasma pneumonia isn't equivalent to pneumonia (although it is a form of pneumonia). How could a competent doctor or scientist accept your argument?

 

[Bob]

The fact that the name suggests to you that the two terms are equivalent, Bob, doesn't justify any claim that the two terms are, in fact, equivalent. Mycoplasma pneumonia is not equivalent to pneumonia, although it is a form of pneumonia. How could any competent doctor or scientist accept your argument?

If the CCC diagnoses for 'ME/CFS', then that suggests there is a single disease or syndrome called 'ME/CFS', which suggests that 'ME' and 'CFS' are equivalent. What else could it possibly suggest?

That's not necessarily my opinion, but I'm just demonstrating one reason why it's not a straightforward issue.

 

[Ember]

What else could it possibly suggest?

Here's another possibility. ME/CFS names a disease or syndrome that is a subset of CFS, but is better identified using the term ME. In the same way, mycoplasma pneumonia names a subset of pneumonia that is better identified using the term mycoplasma, because of its etiology, etc.

 

[Bob]

ME/CFS names a disease or syndrome that is a subset of CFS, but is better identified using the term ME. In the same way, mycoplasma pneumonia names a subset of pneumonia that is better identified using the term mycoplasma, because of its etiology, etc.

That is a good and legitimate explanation. But the CCC brings together the two separate names, separated only by a slash, and uses them to define a single condition or syndrome. It therefore suggests that both names have equivalence in terms of the condition that is defined by the CCC. Only by reading unpublished background material, do you find out that the authors intended the CCC to define 'ME'. But the authors' intentions do not create an unmovable position of fact for the rest of the community, when there are so many other opinions and so much history.

OK, I'm breaking off again now... There is a difference of opinion, and that's all I wanted to demonstrate.

I don't have fixed or strong views about the names, but I don't like to see other people laying out 'unambiguous' 'facts' when those 'facts' are not actually clearly defined.

Edit 1:
However, I do agree with you Ember, that the letter that you originally referred to, could be worded more precisely, and cannot purport to speak for the entire patient community.

Edit 2:
Would it be acceptable to you, Ember, if they used the 'subset' explanation for 'ME' and 'CFS'?

Edit 3:
What about if it was suggested that the term 'ME/CFS' is adopted for Fukuda to indicate that Fukuda diagnoses for 'CFS' which includes a subset of 'ME'? However that's a bit convoluted, and I don't see this being accepted by many people.

 

[Ember]

Edit 1:
However, I do agree with you Ember, that the letter that you originally referred to, could be worded more precisely, and cannot purport to speak for the entire patient community.

Thanks, Bob. Even more importantly, our patient groups claim that our position is the position of "experienced clinicians and researchers" (specifically the ICC in the NCHS presentation), when it's not. Sadly, we've asked DHHS to sort out the confusion, and we've added to the confusion ourselves.

 

[Ember]

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.

Thanks, Tina. Dr. Klimas' comments could also be understood quite differently though. If your interpretation were correct, Dr. Klimas participation in the 100% ICC consensus would be hard to explain.

As I understand her, Dr. Klimas is identifying a problem with using the ICC in the clinical setting that would arise only if you were to take ME and CFS to be the same (which the ICC does not). If you were to take them as the same, you'd use the ICC exclusively and would stop treating CFS patients. That could be a disaster. (Used judiciously, however, the ICC identifies, for differential treatment, a subset of clinically distinct patients.)

I've wondered whether the implications for disability in the US could explain the omission of Fukuda in the section where the ICC stipulates that ME patients “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndromes.” (Only a guess.)

The ICC also created an “Atypical ME” diagnosis, of course. That diagnosis broadens the clinical definition, but wouldn't likely be used in research.

For interest, here are the preceding comments by Mr. Krafchick:

I mentioned the Canadian Consensus criteria because they exist and they are accepted by a lot of people. We could start there and move forward with our research. As the research develops, maybe we refine the criteria. I have been listening to this kind of discussion for years and years and years. The difference between the fibromyalgia community and the CFS community is simply the agreement on a case definition and classification criteria. I think had that happened in CFS, at least the studying would be further along.

 

[Ember]

Edit 2:
Would it be acceptable to you, Ember, if they used the 'subset' explanation for 'ME' and 'CFS'?

Edit 3:
What about if it was suggested that the term 'ME/CFS' is adopted for Fukuda to indicate that Fukuda diagnoses for 'CFS' which includes a subset of 'ME'? However that's a bit convoluted, and I don't see this being accepted by many people.

Of course, Bob, I'd be delighted with a subset explanation for 'ME' and 'CFS'...describing, for example, ME as a distinct form (or subset) of CFS, its cardinal feature being PENE. The letter might then refer to "chronic fatigue syndrome (CFS, known in its most severe form as myalgic encephalomyelitis or ME)."

Unfortunately, the name ME/CFS continues to confuse. The authors of the ICC may think of the name as transitional, but it's not making for a smooth transition. Much might have been resolved for us if the IACFS/ME Primer had used the ICC in place of the decade-old CCC.

Ideally, I'd like to abandon 'ME/CFS' all together, following Dr. Broderick's recommendation:

Another element of debate concerned the use of the name ‘myalgic encephalomyelitis’. We submit that this name had been in existence for decades before the coining of the label of ‘chronic fatigue syndrome’. The suffix ‘itis’ has not resulted in research being restricted to inflammatory mechanisms and the efficacy of various anti-inflammatory drugs. Although the name ‘myalgic encephalomyelitis’ may not be perfect, it is the most accurate and appropriate name available and indicates underlying pathophysiology. Obviously, the ethical implications and medical risks prevent brain and spinal biopsies, thus limiting direct evidence. However, spinal autopsies have identified neuroinflammation of the dorsal root ganglia (Chauduri A. Royal Society of Medicine Meeting 2009). There is simply too much evidence of pathophysiologic neurological and immune dysregulation, immune activation and an imbalance between inflammatory and anti-inflammatory mediators to be ignored [32–56]. Unfortunately, the name ‘CFS’ and its hybrids ‘ME/CFS’ and ‘CFS/ME’ have been used to refer to both ME and general chronic fatigue. The best way to end the resulting confusion is to only use the name ME for those who meet the more restrictive ICC criteria for this very serious disease, which is consistent with the WHO ICD neurological classification (emphasis mine).

The significant misalignment between the focus of this consensus paper, which is limited to ME, and the commentary of Drs. van der Meer and Lloyd appears to be centred on the use of the much more inclusive criteria for CFS or general fatigue. This poignantly establishes the urgent need to clarify this issue by distinguishing patients who meet the ICC criteria for ME from those that satisfy the broader and more inclusive Oxford, Reeves empirical criteria and the NICE criteria. Not only it is common sense not to mix diseases classified under various rubrics in one heterogeneous pot, but it is in keeping with the WHO classification rule that a disease cannot be classified under more than one rubric. Research on other fatiguing illnesses, such as cancer or multiple sclerosis (MS), is carried out on patients who have those diseases. It is imperative that research for ME be carried out on patients who actually have ME. When advances in scientific technology are applied to patients who meet the more specific case definition of the ICC for ME, the current urgent need for identifying and confirming specific biopathological mechanisms and biomarkers will be facilitated, and our improved understanding of the pathophysiology can then be directed towards enhancing treatment efficacy (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full).

But if we are to use 'ME/CFS,' I'd prefer basing our choice of the name on its current widespread acceptance. As you point out, “The CCC are still in use, and have not been retracted...and if somebody is diagnosed using the CCC, then they have 'ME/CFS'...," etc. The letter could then substitute a sentence such as this one: "Yet, consistent with the increased use of the 2003 Canadian Classification Criteria (CCC), many experienced clinicians and researchers have adopted the term ME/CFS."

I don't see how the term 'ME/CFS' could be adopted for Fukuda though. Your earlier point was well-taken: “Fukuda diagnoses for 'CFS', and the CCC diagnoses for 'ME/CFS', and the ICC diagnoses for 'ME.'” Logically, CCC-defined ME/CFS must (like ICC-defined ME) be a subset of Fukuda-defined CFS.... Or am I missing something here? (Our exchange was fast-paced for me, and I continue to edit....)

 

[usedtobeperkytina]

Ok, I am afraid I have lots of other work to do. So, I'm out of this conversation.

Take care all.

Tina

 

[rlc]

Hi Tina, RE 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.

The problem here is that CFS has been defined by the likes of the CDC as a disease that has no physical anomalies, if a physical anomaly is found that explains the patient’s symptoms then they no longer have CFS this is what the CFS definitions say, insane I know! But this is what CFS is whether people like it or not.

So what this means is that by definition any researcher looking for a physical anomalies that causes CFS is kidding themselves because as soon as you find a physical anomaly the patients no longer has CFS! It’s a totally no win situation, CFS becomes like a mirage in the desert the closer you get the more it disappears, the goal post are constantly shifting, and by its very definition no one can ever find a physical cause! One has to remember that the majority of writers of CFS definitions such as Fukuda are psychiatrists, the CFS definitions have been written in such a way that CFS can only ever be seen as a psychiatric disease, because it is scientifically impossible to have a physical illness with no physical anomalies, the inventors of CFS deliberately left all physical anomalies out of their definitions, despite the fact that they knew that Tahoe patients had failed MRI scans etc before they invented CFS. Because you can’t have physical anomalies according to the CFS definitions, if ever anyone finds physical anomalies in a group of patients with CFS symptoms they can just thumb their noses at the research and say it isn’t CFS because CFS doesn’t have physical anomalies, and we continue to get nowhere and never will while physically sick people are given the Psychiatric diagnosis CFS, which by definition it is scientifically impossible to find a physical cause of it.

So how do we solve this problem? We don’t, we by pass it, we should be using the way that the CFS definitions say you can’t have physical anomalies in CFS to solve are problem. ME by its WHO definition, by all the old research and by the modern research such as done by the ICC panel is defined as a physical disease that does and is allowed to have physical anomalies, we don’t have too much agreement as to what they are but physical anomalies have been recorded in ME patients since the 1930s. So what we need to be doing is start saying when ever physical anomalies are found and the likes of the CDC say sorry it can’t be CFS, we should be saying damned straight it’s not, these findings are for ME, if you the CDC want to spend your time researching the psychiatric disease CFS fine, but keep your nose out of ME research, because your definition says that physical anomalies are not found in CFS, so this research isn’t for CFS according to your very own CFS definitions. So what I’m saying is not that we need a name change, what we need is a disease change, people with a physical illness should not be accepting a psychiatric idiagnosis. The ICC is very useful to this cause because it clearly says that ME is not CFS and that ME patients have physical anomalies therefore it is possible for research to find a physical cause and cure!

The CDC knows it invented a bogus psychiatric illness in CFS, its why they have never done anything to try and solve the problem, no attempts to try and get the CDC to add physical anomalies to the CFS definitions will ever work, it is a battle we will never win, because the CDC doesn’t want to confess that it has hidden the existence of ME for decades. So by pass the CDC and go to other government agencies and the press, and tell them we want ME accepted as a real physical illness as it is by the WHO and for research to be funded, because researchers are finding serious physical anomalies in patients that don’t have other known illnesses and the CDC says that it can’t be CFS because they say CFS doesn’t have physical anomalies, so it has to be ME.

Of course we won’t be very popular with the CDC, but it’s not a popularity contest, it’s about saving people’s lives, the CDC has had 25 years to do something useful and has instead misappropriate millions of dollars of research money and continue to come up with garbage research like the Wichita study. The CDC is the enemy, by pass them and find other sources of help and use the CDC own CFS definitions against them, ME patients do and are allowed to have physical anomalies, so CDC, according to your definitions it is not CFS so butt out!

RE your questions about B12, NHM etc. B12, Thyroid and vitamin D deficiencies when they are advanced enough can cause such serious symptoms that they disable people so much that they end up with symptoms, that can easily be confused with ME, some of these conditions if left untreated by themselves are fatal! So they must be tested for in all patients, however they can also be co morbid conditions that are adding to the patients suffering so they, must be tested for and treated, the CDC does not have Vitamin D or B12 on its list of tests to do and it’s testing for thyroid conditions is very limited!!! If as in your case you have low vitamin D and B12, if they have been treated properly which is often not happening! Then the patient obviously has some other illness, there is some evidence that ME patients have higher levels of Thyroid illness and some Doctors believe ME is causing this, but due to the lack of replicated research this hasn’t been proven.

Low Cortisol, people have to remember is a symptom of over forty conditions a large number of which have the same symptoms as ME, Low cortisol should lead to an intensive investigation to find the cause, people should be having serum ACTH tests, aldosterone tests, ACTH stimulations tests, and tests for a large number of illness from tumors to TB, Addison’s to Hemochromatosis, but the CDC doesn’t even have cortisol on its list of test to be done, let alone any of these additional tests. People who are getting tests that say that their cortisol peaks at the wrong time, need to know that the recommendations that cortisol should be high in the morning and decrease during the day is for healthy active people who have normal sleep, people who are healthy but work the night shift have completely reversed cortisol patterns, a lot of ME patients have insomnia and are not very active which messes with the cortisol results, but they don’t necessarily have a cortisol production problem, the way to tell is to get a 24 hour urine cortisol collection done, this will show if the amount of cortisol produced during a day is to low in which case other tests should be done, there is some research that shows low cortisol in ME patients but again it has not been replicated properly.

NMH, POTS and OI, are caused by a very large number of conditions, a lot of which have similar symptoms to ME, e.g. all the conditions listed here cause POTS http://www.dinet.org/what_causes_pots.htm

So everyone with these symptoms should be getting all other diseases that can cause these symptoms ruled out, (this is not happening). However there is a lot of research that says that ME patients have these symptoms but they are cause by ME, it would also be possible to have ME and one of the other conditions that cause NMH etc. The problem with the research that shows that ME patients have NMH etc is that it hasn’t been scientifically replicated, more about that next. So the answer to your question is that NMH etc can be caused by different diseases, but evidence shows that it may also be caused by ME. People need to remember that all diseases can present very differently from person to person so it is perfectly possible for some ME patients to have NMH and some not to.

So why do we not have the answers we need to say for certain that things like NMH, and low cortisol are without a shadow of a doubt found in ME patients? To answer this we need to talk about pure science and correct scientific protocol, something that is very rare to find in this field.

For something to be accepted as a scientific fact, the tests have to be done on people with the same illness, the exact same methods then have to be used by other research groups and if everybody gets matching results then it is accepted as a scientific fact. This is not what has been happening in this field.

As an example if a group of researchers decide to use the ICC, but they also rule out every single other disease that could cause these symptoms in people and then study them, they may get results that say all patients have NMH and failed SPECT scans and low NK cell, if then another group of researchers also use the ICC, but they use the kind of testing used by the CDC in the Wichita study which will guarantee a mixed cohorts, they will get results that say that they can’t find these things in every patient, so therefore the results of the first study cannot be scientifically replicated so therefore they are not scientific facts, and the research gets ignored. This is what has been happening for decades, correct scientific protocol is not being followed, and the people who are most often not following scientific protocol are groups like the CDC who have the power.

So we have to make sure that research gets back to correct scientific protocol, and that it is based on the scientific fact that, ME is a disease that can cause a certain set of symptoms but is NOT any of the other ones that can cause these symptoms. Without proper testing to rule out other diseases every single definition is just a useless pile of paper, all of them have not been based on correct scientific process, some like the ICC are based on extensive clinical experience, but this is not scientific tested and replicated fact, a lot of the CFS definitions have been written by people who have very little clinical experience and some of the people who have written them have had no clinical experience with ME patients whatsoever.

This is why we have all these unanswered questions and nobody can agree on a definition, because none of them are scientific fact, we need to start again, and do testing on people who have had all diseases ruled out and base a new definition on the scientific facts that are found and have been replicated by other researchers. Until then arguing about which one to use is a waste of every ones time, because none of them, are science.

So when it comes to advocacy there is a major problem because most of it has not been based on scientific facts.

People are generally not aware that CFS by definition is a psychiatric disease, because it is scientifically impossible to have a physical disease that does not have physical anomalies.

Because people are not aware of this they say we want more funding for CFS research, why do people won’t more money for research into a psychiatric disease that they don’t have?

They should be asking for ME to be recognized as a real disease, and research funded, and for CFS to no longer be given as a diagnosis to people with a physical illness.

People have been calling for the name CFS to be changed to ME, all this will achieve is that the psychiatric disease CFS will be renamed ME, making ME a psychiatric disease.

People are always campaigning for which ever definition they like the most, but none of them are based on scientifically proven facts, We need to start again and it needs to be done by following correct scientific protocol so no one anywhere can question the results!

Most people because of a lack of medical background are completely unaware that the testing recommended by the CDC and the testing often used in research to rule out other diseases that can cause these symptoms are woeful beyond belief, leading to large numbers of people having their correct diagnoses missed, and mixed cohorts in research, so we haven’t had any advocacy aimed at fixing this problem.

So advocacy has to start again and be based on clear cut simple to understand goals, which will actually fix the problem once and for all.

So we need to start with a clear understanding that CFS by definition is a psychiatric diagnosis, and that all the research and definitions are not scientific facts, because scientific protocol has not been followed and even good research has not been replicated, so we can’t go round shooting are selves in the foot but stating things as facts, when they are not proven it makes us look stupid. and we can't continue saying that CFS is a physical illness because it isn't.

The scientific fact that we do have is that, ME is a disease of unknown origin that causes a certain set of symptoms that is NOT any of the other known diseases that can cause these symptoms.

So firstly we need to find a way to get a complete testing guide written that rules out every other disease that can cause these symptoms.

We then need to campaign for it to be compulsory for everyone to have these tests done, so that all the misdiagnosed are found and we are left with a pure cohort. The United Nations bill of rights of which the US is a signatory, states that

“Inherent in the right to health is the right to the underlying conditions of health as well as medical care”

Denying people tests that are proven by medicine to be needed to find all the causes of fatiguing illnesses looks to me to be a breach of the United Nations bill of rights, and this bill of right should be used to force a change in this situation!

We need to demand that the WHO recognized physical disease ME, is recognized in the US and that all people who have symptoms along the lines found in any of the definitions who don’t have any of the other known diseases that can cause these symptoms, be diagnosed with ME, until such time that the science has been properly done to find out what is going on.

We need to demand that ME research is properly funded and that all research is done following correct scientific protocols.

And we need to demand that the CDC CFS unit is closed and the funding is transferred to a different government health department. Due to the CDCs long history of misappropriating research money and complete failure to come up with anything that is useful and scientifically isn’t a joke, and everything they have done is a waste of government money.

And I’m sure there will be people reading this who will be going there is no way we can achieve that. But because the patient population has been victims for so long, a large number of them have a victim mentality; they think that the only approach is to go begging to the likes of the CDC for some minor improvements. But the US is not the UK, in the UK the government is centralized and controls the health system, Wessely etc are appointed by the government, the government has used the official secrets acts to hide information, and doctors and nurses who stand against the governments ME policies get struck off. The government has total control.

In the US it is very different, the US government is split between the congress and senate, the parties often do not have control of both, a situation that can be exploited, the different states have considerable powers to act independently to the main government again a situation that can be exploited, the US medical system is largely private, and is not under control of the government as it is in the UK, government health agencies are split into several different groups that can act independently of each other. So in the US you can bypass the CDC and go to the likes of the NIH or HRSA or AHRQ. The majority of medical research is not controlled by the government it is done by the major universities.

There are important issues that have been missed in the past by advocates, such as the CDC is not allowed to invent new diseases!!!! It can only make new definitions and suggest names for research purposes!!! I.E if the CDC say’s that the disease it invented CFS is a real disease it is acting against its mandate!!!! And they should be challenged on this, People also need to realize that the CFS part of the CDC is only a very tiny part of the CDC, and if CFS is made by advocates into a very hot potatoe, then the rest of the CDC will be more than happy to hand it over to another government agency.

The Patient community is acting as if it has no political power, this is not true, it is estimated that there are 4 million people with ME in the US, So what the US orgs should be saying is we represent 4 million patients, plus their relatives and friends, and if which ever political party is being approached does not act in accordance with are wishes we will all be voting against your party, 4million plus friends and relatives say an extra 10 to 20 million people is enough to change the results of all elections, this is a tactic used by groups like the gay, African American, and Hispanic communities, and some religious groups, the fact that the groups of people that these advocates claim to represent often aren’t even aware that it is being done and won’t be told how to vote anyway, is neither here nor there, the politicians see the treat that they could lose these communities votes, and therefore elections, and start making concessions to them, the US orgs need to adopt this tactic NOW. There is an election coming up.

Although approaches have been made to the likes of the CDC in the past, I have never heard of attempts to get correct information to all the politicians, the reality is that in the last 25 years almost all US Presidents will not of even known that there is a major problem with ME going on in their own country a situation that has to be changed!

Tina you because of your position in the US orgs and contacts with government agencies , are in a position of power to get changes made, I’m not, I don’t even live in the US. A good place to start making a change is to try and get a complete set of testing written to rule out all other illnesses that can cause these symptoms. On these links you will find information that shows how woeful the CDCs testing is, this is the links to the IACFS/ME primer that has recommendations for extensive testing http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf these are links to articles by Dr Mirza that point out some of the major faults in the CDC and NICE definitions testing requirements http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome and http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat if you compare these to the CDC testing recommendations here http://www.cdc.gov/cfs/toolkit/diagnosis.html the major cause of are problems immediately becomes apparent, It is CDC and therefore government policy to not test people correctly to rule out all other disease and hand out CFS diagnoses to anyone who doesn’t fail the CDCs small amount of tests, a truly appalling situation!!

Obviously as none medically qualified people we can’t do much about this, but I see that PANDORA does have doctors that could help with this, such as Dr Linda Garcia, if they are willing, you could pass these links on to them, and they could write about the faults in CDC testing and demanding action, and it will have weight because it is coming from a doctor, the US orgs could then send this information to all politicians, and relevant government organizations and do a press release, this should be accompanied by stating that you represent 4 million patients plus friends and relatives, that all the research done by the likes of the CDC is flawed due to it being done without adequate testing to rule out other disease and is therefore done on mixed cohorts, and demands that the psychiatric diagnosis CFS stops being given to physically ill people, and clearly state that as CFS is defined as having no physical anomalies, research that finds physical anomalies in people is obviously not research into CFS and that the WHO recognized disease ME be recognized in the US and research funded etc. this will take a bit of time to do but it can be done before the election starts and politicians are likely to make concessions. This can be backed up by spreading the information through social media, and things like making youtube videos that explain the situation .

Do any of the US orgs have a helpful lawyer? Because one is needed to investigating using the UN bill of rights against the CDC and investigating the CDC for breaching its mandate and inventing a new disease etc.

Anyway I hope you can see where I’m coming from and that you will be able to put these ideas to good use.

All the best

 

[CJB]

ric, your post was a blog.

 

[floydguy]

RLC really dreams big. Several thoughts...if there are 4MM people with CFS, how many with ICC ME; 100K? Also taking on the entire US Govt, UN, and medical industrial complex seems a little absurd at this point. Look at the Autism community which is bigger, better organized and generally advocating for kids rather than middle aged "tired" people. They haven't gotten very far in their efforts so I don't see how we are going to do any better. The simple goal at this point should be to use ICC or even tighter criteria for research purposes. In fact, in the US I'd like to see it mandatory that samples come from those clinicians most familiar with the disease, ie Montoya, Komaroff, Klimas, Cheney, Peterson, etc (the way Lipkin is doing it). That in itself would likely get rid of 90% of the non-scientific studies being conducted.

 

[Bob]

rlc, the differential diagnosis table is on page 16 of the IACFS/ME clinical primer:
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
Does that cover it satisfactorily, as far as you are concerned?

Here's Byron Hyde's (Hummingbird) list of differential diagnoses for his Nightingale definition of 'ME', for anyone interested in reading further:
http://www.hfme.org/misdiagnosis.htm#397044121

 

[Bob]

OK, I've tried to extract all the suggestions in this thread relating to recomendations for the CDC. I might have missed some because the thread is so long, so please post any that I've missed below. Then I will make a comprehensive list, that we can discuss/debate.

I haven't included any of the suggestions for how the CFSAC should operate. That should be a separate list, and if anyone wants to collate those suggestions, then they can.

I suggest that we work on a constructive basis, so that we look towards making a list only of things that we can all agree on, and excluding anything that we cannot all 100% agree on. (So I haven't included anything about names, because we won't all agree on that.)

So we can now see if we can all agree any of the suggestions, and on the wording used. I haven't yet tried to use careful wording, as it's best to see which ideas we agree on first.

I think we should also consider our suggestions in the context of the "Joint Request from the ME/CFS Community for Action" letter, as per Mary's (@medfeb) and Tina's (@usedtobeperkytina) posts. I suggest that we only include things that do not contradict that letter, so we can have a united voice on the things we agree on, as has already been discussed. A united voice will make us more effective.

Joint Request from the ME/CFS Community for Action (letter):
http://www.coalition4mecfs.org/Joint_Letter.html
http://www.masscfids.org/resource-library/14/392
As discussed in the following posts:
http://forums.phoenixrising.me/inde...er-what-should-we-do.17972/page-4#post-274257
http://forums.phoenixrising.me/inde...er-what-should-we-do.17972/page-5#post-274383
http://forums.phoenixrising.me/inde...er-what-should-we-do.17972/page-9#post-275642

We obviously don't have to agree with everything in that letter, but I suggest that we don't include anything that contradicts it, and that we continue to remain constructive. Not including contractory information, does not mean that we agree with everything in that letter. It's just about getting our own message out there in a united and constructive way.

SOC suggested this, which I think is a good idea:
"We, probably through our patient organizations, should draft, in advance, suggested proposals/recommendations for the committee to vote on and distribute them to as many of the committee members as possible."
See these posts:
http://forums.phoenixrising.me/inde...er-what-should-we-do.17972/page-3#post-274167
http://forums.phoenixrising.me/inde...er-what-should-we-do.17972/page-4#post-274291


If anyone strongly disgrees with anything I've said, above, please can they quickly raise the issue so we don't waste energy later.

This is quite an experimental project for the forum, so let's see how it goes!

 

[Bob]

This post is not now being updated - please see the latest list:
http://forums.phoenixrising.me/inde...r-what-should-we-do.17972/page-13#post-276412






So, please comment on the following list of suggestions.
We need to know if anyone has opposition to any of the specific ideas, or wording.
Please state whether you oppose the idea, or wording, and why.

And anyone should please present alternative, prefered, or improved wording for any of the points.

If there is opposition to any items, then we scrub them if we can't find alternative wording that everyone can agree on.


So, here is the list of suggestions extracted from the thread:

1. Promotion of CBT and GET as therapies for CFS patients should be removed from CDC literature, toolkit and website.

2. The IACFS/ME toolkit should be promoted and adopted by the CDC.
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
Suggestion already made at last meeting.
Similar suggestions but with an alternative approach could be made here?
(e.g. "The CDC should create a toolkit with the IACFS/ME's toolkit as a reference.)

3. [none] [sorry - mistake]

4. The CCC and ICC should be used alongside Fukuda for all future government-funded research.
Ask the CFSAC to recommend that either the CCC or ICC, or both, are always used in government funded research into CFS or ME/CFS or ME.

5. More research funding for the biomedical model of illness, using CCC and ICC for all research.

6. Research trials be carried out into Rituximab, and related pharmaceuticals, using CCC and ICC cohorts.

7. CDC creates a comprehensive list of differential diagnoses, and the tests needed, and makes this compulsory for all potential CFS patients, and all CFS patients, to receive.
As per the IACFS/ME toolkit?
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
As per Hummingbird?
http://www.hfme.org/misdiagnosis.htm#397044121

8. A series of state-of-the-art specialist ME centres are set up across the country, which offer biomedical investigations and treatment, and do not follow the biopsycosocial model of illness, and which do not offer GET or CBT.
A number of objections to this item.

9. The CDC should stop using the 'empirical' definition for research.
Already recommended previously

10. The CDC should remove all information from their website based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS.

11. Give CFSAC power to educate physicians, schools, social services, and the public itself, and the funding to issue press releases.

12. Invest research funds into finding a biomarker or biomarkers for ME.
This has already been recommended.
But can we suggest a re-recommendation with research using CCC and ICC?


Relating to the new CDC diagnostic criteria:

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.

14. For the CDC to engage with the patient community when creating its new diagnostic criteria.

15. That the new CDC criteria be subsetted in order to create more selective cohorts, including a cohort identical or similar to the ICC.

16. Ask the CFSAC to ask the CDC for exact details of their diagnostic criteria project.



Also, one other thing, which I think would be worth asking the CFSAC, relating to the CFSAC, which I want to suggest:

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.



Edit:
Additional suggestions added:

18. CFSAC should recommend that the CDC add myalgic encephalomyelitis (ME), as defined by the ME-ICC and classified by the WHO, to its list of diseases.

 

[Ember]

4. The CCC and ICC should be used alongside Fukuda for all future government-funded research.
Ask the CFSAC to recommend that either the CCC or ICC, or both, are always used in government funded research into CFS or CFS/ME or ME.

Oppose wording (CFS/ME): Use ME/CFS instead, consistent with CCC and Joint Request for Action

 

[Bob]

Oppose wording (CFS/ME): Use ME/CFS instead, consistent with CCC and Joint Request for Action

Agreed, thank you. I've changed it in my list. I get used to using 'CFS/ME', because that's what the UK authorities use.

 

[Ember]

5. More funding for biomedical model of illness, using subsets of Fukuda (CCC, ICC) for all research.

Oppose Wording: “subsets of Fukuda (CCC, ICC)”

Fukuda has no subsets. Use instead (1) "using subsets of CFS (ME/CFS, ME) for all research," or (2) "using CCC and ICC for all research."

 

[Bob]

Oppose Wording: “subsets of Fukuda (CCC, ICC)”

Fukuda has no subsets. Use instead (1) "using subsets of CFS (ME/CFS, ME) for all research," or (2) "using CCC and ICC for all research."

Thanks Ember. I agree with your wording so I've edited my original post as follows:
"5. More research funding for the biomedical model of illness, using CCC and ICC for all research."

Other people should make it known if they don't agree with any changes that I make.

 

[rlc]

Hi Bob RE rlc, the differential diagnosis table is on page 16 of the IACFS/ME clinical primer:http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
Does that cover it satisfactorily, as far as you are concerned?


Here's Byron Hyde's (Hummingbird) list of differential diagnoses for his Nightingale definition of 'ME', for anyone interested in reading further:http://www.hfme.org/misdiagnosis.htm#397044121

The IACFS/ME primer guidelines for testing found in tables one and two are on the whole good, but it does have many faults and should not be used as the final say, until these are corrected!

Examples are it does not include thyroid anti body tests only TSH and T4, it does not mention that the reference ranges for TSH, B12, glucose and Vitamin D used by most labs are wrong, these are very common conditions and if the new information is not included then large numbers of people are going to have their diagnoses missed! It says to test calcium, which will raise the alarm of Hyperparathyroidism, but it does not include information that the belief that 90% of doctors have that PTH is always high when people have this condition is wrong see http://parathyroid.com/diagnosis.htmHyperparathyroidism is not on the IACFS/ME list!!! It says to measure morning cortisol, but most doctors think that if cortisol is in normal range, there is no way that the patient has an adrenal problem and will not order a ACTH stimulation tests so diagnoses will be missed, so instructions that Cortisol tests are unreliable and even people with Addison’s can pass them need to be included. Their recommendations for doing Iron studies do not include transferrin saturation which is the most accurate test for early hemochromatosis, so diagnoses will be missed. The HFME list is far from being everything that Dr Hyde tests for, he tests for a large range of other things like Syphilis, and legionnaires, but if you compare the HFME list with the IACFS/ME list you will see that the IACFS/ME list does not include things like Bechets.

But we don’t just need a list of diseases to be ruled out, what we need is medically structured instructions that rule out all disease that are easy to follow by the average doctor, and is written in a way that does not waste money on testing, we don’t need every patient tested for every condition. If they have symptoms that indicate a certain disease then they will only need those tests.

So it should start with instructions to rule out all the most common illnesses and initial tests to do this should be done first, so it should start with tests like CBC, Liver and kidney studies, iron studies, B12, Folate, Vitamin D, glucose, common infections, medicine interaction problems, screening for depression etc, etc.

All the patients that don’t have their diagnosis found with this testing will then move on to the next level of testing for rarer conditions and more blood tests done and imaging scans may be needed.

And so on until you get down to the incredibly rare diseases, which then get tested for.

These instructions are going to have to include all the pit falls that the average doctor falls into such as the ones of wrong reference ranges, the problems with cortisol tests and diagnosing Hyperparathyroidism etc, etc

If it is done this way all doctors will be able to follow it and find the cause, or if tests results indicate refer to the correct specialist.

There is nothing new or way out about this, it is the same kind of process as you’ll find in the instructions to find the correct diagnosis for Fever of unknown origin that I gave you the link to earlier. It is standard medical practice for investigating sick people, get a complete differential diagnosis list for all the conditions that could cause the patients symptoms, and work systematically through them starting with the most common therefore the most likely until the correct diagnosis is found. And this is the complete opposite of what we have happening in this field, which is don’t do a complete differential diagnosis list, don’t even do tests that rule out all the exceedingly common possibilities, and then give the patient the psychiatric diagnosis CFS, which then makes it very difficult to get more testing, and leave the patient to suffer for the rest of their life. So I’m only arguing for correct medical process for investigating patients with fatiguing conditions to be followed, which should be a basic human right!!!!

The ones that have had all these tests done, and no cause is found for their symptoms can then be put in the medically unexplainable group, and given a ME diagnosis until such time that research is done on this group to find out what is going on, which may involve this group being subgrouped as different illnesses and more appropriate names for it invented.

So the IACFS/ME tests are a good start, but has faults that even I can see and I’m not a doctor! So it will need to be corrected before it is usable. If my suggestion that Tina talks to someone like Dr Garcia about this issue is accepted, I think it would be a good idea for Dr Garcia to talk to the likes of Dr Hyde who has 25 years of experience in doing this and apparently has a detailed check list for ruling out all other diseases, that sounds very similar to what I’m outlining, so Dr Garcia may be able to get more useful information from him. It would also be a good idea for Dr Garcia to contact Dr Mirza who also has a very methodical way of investigating these kinds of patients and mentions problems that I have never heard Dr Hyde talk about. Using the IACFS/ME as a starting point and then getting Drs Hyde and Mirza who have decades of experience in doing this, to fill in the gaps and correct faults in the IACFS/ME should fix all the problems and create an extremely good set of instructions.

My vision would be that once it is created, other doctors if they know of anything else that isn’t on the list would be able to contact the writers and get it corrected, if it was available as an internet page this could be done very quickly, and that it would always be able to be updated if new information became available.

So the IACFS/ME is a good start and light years ahead of the CDC list, but it is still far from perfect, and we need perfect if we are going to achieve the goal of not having mixed cohorts!!!!!

All the best

 

[rlc]

Hi Floydguy, we need to be dreaming big, the aim has to be to solve this problem once and for all, not tinker with it. If we achieve half of what I set out then it will be a massive improvement, and then we can re plan how to fix the other half.

As far as advocacy goes it is irrelevant how many people have ICC ME, what we need is numbers, if it is alright for Dr Peterson to say that there is 4 million in the US with CFS, its fine for us. The facts are all politicians want are votes, if they are made aware that 4 million patients plus friends and relatives won’t vote for them unless they give us what we want, they will shit themselves and start making concessions, then the other parties will offer more concessions in an attempt to get are votes. Nobody knows how many people have ME in the states because it’s not a notifiable disease. But nobody knows how many gay people there are in the US either, but it doesn’t stop them saying there is millions of us, and we won’t vote for you unless we get what we want, why do you think Obama has done a back flip and is now supporting gay marriages, it’s because he doesn’t want to lose their votes and the election!

Of course we should be taking on the US government especially the CDC, they are the cause of the problem, and we do have the people power if the US orgs can realize this to make changes. This is what all successful advocacy groups do.

Of course we should have a lawyer looking for any legal loopholes that we can exploit to our advantage; it’s what all other successful advocacy groups do.

Autism advocacy is a prime example of how advocacy should NEVER be done. They have decided what the cause of Autism is, vaccines, based on one study which has since been shown to have been fraudulent. Instead of campaigning for all possibilities to be investigated including vaccines, which is being done anyway, and raising money to help researchers. They have gone on a worldwide campaign to stop parents vaccinating their children. Which has lead to them being despised by the medical community, because it is the medical community that has to deal with all the dead and permanently maimed babies, that have been caused by the Autism advocacies campaign to stop vaccinations based on a poor study that no one has been able to replicate because it was wrong in the first place. If you want an example of bad advocacy Autism advocacy is it.

The ME community did a similar thing with XMRV when that study was published, a lot of the patient community decided without waiting for the science to be done that this was the cause, and abused scientists who said that there were faults in the original research, and managed to alienate a large amount of the scientific community, which was hard at work doing the science, and managed to convince a lot of people that ME advocates are nuts!

ME advocacy has to start being based on facts, people need to stop asking for money to research the psychiatric disease CFS, they need to stop saying that ME is such and such, because results have not been scientifically replicated, its fine to ask for a study to be replicated, but no one can say ME is something until this has been done, in the eyes of the scientific community it makes us look stupid. We need to start campaigning along the lines I have suggested which if achieved will fix all the problems. Firstly making sure that everyone is properly tested to make sure that all other disease are ruled out otherwise everything else is a waste of time!

People are in fantasy land if they think that the CDC will accept the ICC, it won’t be accepted because it hasn’t been scientifically replicated, it is based on clinical experience not replicated science, so the CDC can just say that its faulty Wichita study says otherwise so the ICC is wrong.

We should not be asking for any of the definitions to be used, because none of them are based on replicated science, therefore any groups that don’t agree with what they say can just dismiss them.

What we need is replicated scientific studies that will resolve all these issues once and for all and nobody will ever be able to argue with them, because they will be scientific facts!

What I mean by this is that something like four groups of 100 patients who have had every other possible disease ruled out are studied, in different locations by different groups of doctors and scientists.

They will be asked what all their symptoms are, 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.

Once this information is collated from the four different groups you will have pure scientific information, from which you will be able to answer all the unresolved questions about ME and a definition will then be able to be written that can’t be argued with because it is scientific facts!

It is more than likely that a diagnostic tests or a set of tests for diagnosis will be found from doing this. After all Dr Hyde who does do everything he can to rule out every other disease before saying that a patients has ME and before he starts doing other tests, has said for at least the last 15 years that ME patients always have a unique pattern of Hypoprofusion measurable on SPECT scans, which can also be confirmed by PET and QEEG scans and that these tests can be used to accurately diagnose ME patients, nobody has ever replicated his methods of ruling out all other diseases to confirm this, so it is quite possible that the diagnostic test for ME that everybody wants has been sitting there unused all this time. The replication study that I outline above would prove if you can diagnoses with SPECT scans.

So how much would this cost? a damned site less than the CDC wastes every year researching its bogus psychiatric disease CFS!

RE in the US I'd like to see it mandatory that samples come from those clinicians most familiar with the disease, ie Montoya, Komaroff, Klimas, Cheney, Peterson, etc (the way Lipkin is doing it). That in itself would likely get rid of 90% of the non-scientific studies being conducted.

I would recommend taking a look at the testing that Stanford recommends for ruling out other disease here http://chronicfatigue.stanford.edu/overview/diagnosis.html why are disease that should be checked for not on its list? Why does it not have an explanation that the reference ranges for a lot of the tests they recommend are wrong? Why does it have so few tests? Why does it contain ridiculous statements like “If the CBC is abnormal, a ferritin test may be appropriate”? Hemochromatosis which causes all the symptoms attributed to CFS and effects 1 in every 250 Caucasians it does not cause an abnormal CBC, and will not be picked up without testing ferrintin! In fact there are no iron tests whatsoever on their list of tests to be done! Why does there list of testing not include Cortisol? Etc, etc, etc. There recommendations for ruling out other disease are just about as bad as the CDCs!

If this is the kind of testing they are doing to select a pure cohort for the Montoya, Lipkin study it will guaranteed a mixed cohort, and the results will only add to the confusion.

I understand why people like the doctors that you list, they are very kind and sympathetic about the patients, but that doesn’t mean that they are doing it right, these people are not all expert diagnosticians, they have to the best of my knowledge never mentioned finding high misdiagnosis rates, or recommend that extensive testing is done to rule out other diseases in the way that the likes of Dr Hyde does.

I think before we start holding their research up as if it is perfects, first we need a complete list of all tests to be done and diseases to rule out made. If the testing that these doctors do does not rule out all other diseases, then their work will immediately become invalid and they will have to start again using a pure cohort. We need 100% proven pure science, not all these doctors have made available what they consider complete testing, but the Stanford list leaves a lot to be desired!! And because they never mention finding large amounts of misdiagnosed and I’m more than a little suspicious that they are not ruling out all other diseases correctly.

All the best