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

[WillowJ]

1a. An independent panel of Diagnostic experts will be created to write a 100% complete differential diagnosis list of all other diseases that can cause the symptoms of ME and CFS,

this is not possible? it is theoretically ideal, but perhaps not possible. Patients with ME and CFS are different, patients with other diseases are different from 'classic', the list of diseases is quite long and there is probably not an exhaustive list anywhere, and many diseases remain unidentified or do not have definitive tests. One cannot, with absolute certainty, prove that patients do not have diseases h-z. Also one may not be able to list all the diseases that may mimic whatever our community has.

Certainly we can and should do much better at testing for other problems.

I suggest to 'write a comprehensive differential diagnosis list of other diseases and conditions'

(add conditions because some things potential CFS patients might have are not strictly considered diseases, like simple vitamin D deficiency--if that's all they have which is causing them to be fatigued, aching joints, and so forth, then it's not considered a disease I don't think, unless it's severe enough and gone on long enough to cause tissue damage, osteoporosis, etc.)

 

[WillowJ]

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

No, until replication studies have been done on pure cohorts it is impossible to put out accurate information. We have to do things in a proper scientific manner replicated studies first.

getting really good information is going to take time. In the interim, it would still be better to put out flawed information (regardless of who does this, CFSAC or someone else) rather than let doctors continue to infer from the vacuum or the CBT/GET/counseling recommendations that ME/CFS is a wastebasket/hypochondriac condition.

Telling doctors "these patients have a serious, terribly debilitating, organic disease, and it may be useful to test for NKCC, use SPECT scans, test for pathogens, check for OI/NMH/POTS, look into sleep dysfunctions, do treat their pain, watch out for PER, etc." is better than telling them nothing. And much better than letting CDC, Kings, Barts, Mayo, and Emory department of psychiatry tell them balderdash.

OPPOSE: Please, please remove this item. It is impossible. The CFSAC is governed by the Federal Advisory Committee Act. It has no powers to issue press releases or educate anyone. This cannot be accomplished. Asking for it just shows that we are either pie-in-the-sky dreamers or ignorant of how an advisory committee is obligated to operate under law.

other committees do education? cf autism committee post 25? What's different about them, from us? (this is a serious question, not argumentative - I am confused about this and asking for clarification so I can understand)

 

[WillowJ]

CDC doesn't think it created a separate "empirical" definition, so these discussions tend to be circular.

Rather than asking not to use this 'definition', then, could we ask them to stop using that instrument to help assess patients?

 

[WillowJ]

I can't agree with that rlc, because CBT is only given to CFS patients on the basis of a 'fear of exercise', and 'maladaptive cognition'. It's not given as a coping strategy. Not in the UK anyway. The PACE Trial demonstrated that only 13% of CFS/ME patient responded to CBT (and that didn't even include housebound patients), and it's primary finding was that CBT was ineffective at reducing physical disability (It was moderately effective at reducing the symptom of 'fatigue'). These were the findings of a massive £5m study.

I think most of us want to see CBT removed, esp considering the results from the pace trial.

This issue is also about the implications of CBT being included... It suggests that ME/CFS is a psychological illness, and we want to move away from that.

So would you object to us asking for CBT to be removed?

I prefer Alex's wording - That seems acceptable and very reasonable to me - But I'm not sure if many of us will want to advocate for CBT being included, because it could easily backfire on us:

alex3919 said:

7. CBT to assist coping can be an optional therapy for CFS patients but not for the purpose of modifying hypothesized dysfunctional illness beliefs, and GET should be removed from CDC literature, toolkit and website.​

I agree with your concerns, Bob.
Furthermore, while it's appropriate to use CBT in the way that Alex has mentioned as an optional therapy, it is inappropriate to include this on a disease website. Doctors know they can refer for CBT if needed. It is not specific to ME, CFS (is not even generally useful for Oxford-CFS, better called CF or ICF) or any other disease and it is not listed on any other disease websites even though 'real' CBT is used for patients with other (better accepted) chronic life-changing conditions. It is not standard (and therefore confusing and misleading) to list it on the CFS website. Even though 'right' CBT is fine and may be appropriate for some patients, the reference is unnecessary, unhelpful, and should be removed.

 

[usedtobeperkytina]

Yes, you're not an outlier on this Mary...

I personally do not want the CDC to include anything about CBT, GET, incremental exercise, emotional coping mechanisms etc., on their website. They will only get it 100% wrong all the time.

If we were to suggest including anything, then we'd have to be extremely specific with what we consider acceptable and unacceptable.

Doctors don't look into the subtleties of different kinds of CBT or into the fine details re GET. For most doctors, a CBT therapist is a CBT therapist, and so patients will have their illness beliefs challenged. And GET will equate to getting out and exercising (i.e. that the patient should "get up of your backside" or "get a life"'.)

Personally, I can't accept suggesting that the CDC keeps CBT or GET on its website.

But I would definitely consider alternative wording re 'emotional support' instead of CBT, and re "very controlled activity/exercise for ME patients - based on an individualized assessment of their level of impairment using tools like VO2Max and an individualized plan for how they can do it safely."

The trouble is, again, though, that 'emotional support' will be misinterpreted to mean that ME is an emotional illness. In any case, 'emotional support' should be offered to everyone with a serious disease, shouldn't it? So I'm not sure about including it specifically for CFS on the CDC's website, unless they automatically include standardised wording for all diseases on their website.

And any plan for very controlled activity will not be properly interpreted or implemented by either the CDC or regular doctors. Not in the way the Nancy Klimas administers it. It will be trashed, and reinterpreted as meaning "get out and exercise."

So I think we are wasting our time with both, and I think our priorities should be elsewhere.

My preference is to just ask the CDC to remove all reference to both CBT and GET. They might ignore this request, but it sends out a strong signal. And, as I said earlier, CBT and GET only help 13% of patients, as per the PACE Trial, leaving 87% unhelped. Many harmed patients are also harmed by CBT and GET, as per UK patient organisation surveys.

So the evidence suggests that they should remove all reference to CBT and GET, as they are unhelpful at best, and harmful at worst.

In PANDORA's testimony, that I read, we brought up these issues.http://p-a-n-d-o-r-a.org/documents/CFSACJUNE2012Testimony.pdf (see page 3).

This is very obvious that the term used for other diseases, as far as helping a person's attitude, is called counseling. CBT is not the appropriate term for helping someone cope with the blow of knowing they have a life-altering chronic illness. Which is why the term used in the diabetes section is counseling, not CBT. However, what is under CBT in the CFS section is not counseling to help someone adjust emotionally and mentally to having a chronic debilitating illness. What is described there is instructions on lifestyle changes to prevent increasing symptoms. Just like a diabetic is told to exercise and change their diet to prevent an increase of symptoms, ME/CFS patients should pace their activity. This does not require someone to give CBT. It's medical advice given from a nurse of physician, just as diet and exercise instructions are given to diabetics by a nurse or physician.

Why does everything have to be different with my disease. It is like I am in a perpetual "opposite day."

It isn't in our testimony, but we also take issue with GET. The problem is the graded or gradual part of it implies continual until the person gets back to normal. Well, normal may never come. So, what ever "exercise" program is used may have to stop lower than normal. We also take issue with the term "exercise." One of the definitions for "exercise" is mental or physical exertion. And this is the way most people think of the word. However, we know an ME/CFS patient should not exert themselves or they will exacerbate the symptoms.

A better term would be low level body activity, gradually increasing, but always staying within tolerable limits. Someone else may come up with a shorter term than that. The CDC website does explain the low level with an example, which is good. But the word "exercise" is used with aerobics, lifting weights, etc. For us, in the beginning, we are talking about 1 minute of leg lifts while reclining. Actually, as the primer says, no protocol of "exercise" should take precedence over self-care or home-care activities.

If you agree with these points and include them in your effort here, then the message on these points will get louder.

Tina

 

[usedtobeperkytina]

Also, there should be two definitions, one for research and one for clinical use. One is more narrow, the other is broader.This is the way it was done in finding the biomarker and cause of AIDS. For research, a narrow definition must be used. The broad definition is appropriate for clinical use.

Also, there should be a scale of severity. We can use the self-report chart in the primer. This will help in research. And it will help patients get disability. So, the new disease name, should have types, like other diseases. Or levels. "I have level 6 ME," for example. The primer uses a functional capacity chart: http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf (see page 37). That can be used in research to subgroup on severity level.

And I think the primer uses the CCC for diagnosis; please correct me if I am wrong. Seems the CCC has more traction. That might be a recommendation that gets lots of support of scientists outside of CDC.

The goal that the Coalition has is not to distinguish between CFS and ME, because as many mentioned here, those who meet one of the ME definitions would also meet Fukuda. The Coalition 4 ME/CFS's goal is to get "CFS" gone completely. As long as it is seen as different, then it will continue to exist. And as long as it continues to exist, then ME will not be recognized in the US. One disease, but with subgroups.

Breast cancer is one group. However, for research, you have stages of it. Stage 1, stage 2, etc. Trying a new therapy would require the researcher to tell what stage the patients are in. This is why my mother had a different treatment for her breast cancer because it was in 4 out of 10 lymph nodes tested. Had it been more, then another treatment protocol would have been recommended. Less, and another treatment protocol would have been recommended. If level of disease can be used in research, although it is recognized as one disease with one name, so can our disease.

Also, in breast cancer, there are different types. Some are more genetic than others. Some are estrogen sensitive, others not. So, when doing research, the researcher will often do research on just those who have the breast cancer gene. Same disease, same name, but subgrouped in research to find more appropriate treatments.

The term and the current Fukuda (and Empirical) for CFS must go. It has not served us well in patient care, public understanding, getting disability benefits and in research. It is obsolete. Even research of the Fukuda patients show it is a neurological disease, not a list of symptoms under "chronic fatigue."

 

[rlc]

Hi willowJ RE

This is not possible? it is theoretically ideal, but perhaps not possible.

This is very possible to do! We are only talking about ruling out diseases that have similar symptoms to ME and CFS, this would be around 50-100 diseases, any diseases that cause symptoms that are not ME, CFS symptoms do not need to be investigated, such as all disease that cause a quick death, very high temperatures, bleeding, boils and blisters etc, etc, this rules out thousands of diseases.

The current CDC list of tests would only rule out around 30% of diseases that can cause these symptoms, IACFS/ME list would rule out around 75% so we only need work done so that the other 25% get the right diagnosis. Almost all the diseases have diagnostic tests already, or like Parkinsons they have extra symptoms that differentiate them from CFS patients.

It will take some work and we need some very clever doctors on board, but it is perfectly possible to make this 100% perfect! Which is what is needed or people will suffer needlessly, and we won’t have pure cohorts
.
Complete differential diagnosis and testing list are written for almost all other conditions except ME and CFS!

RE

One cannot, with absolute certainty, prove that patients do not have diseases h-z.

This can be done, it is what following the differential diagnosis process is all about. The differential diagnosis procedure is explained here http://en.wikipedia.org/wiki/Differential_diagnosis

RE

Also one may not be able to list all the diseases that may mimic whatever our community has.

This can be done IACFS/ME has gone a long way towards doing it, the process just needs to be completed with some other expert help.

RE

and many diseases remain unidentified

The people who have CFS, ME symptoms who do not have a known cause found by this process, are the ones that will then be used for the independently replicated study, which will search these people for Physical anomalies so that the diseases/diseases can be identified and definition/definitions written that is based on replicated science that is provided by the study. From here we will be able to study the disease/.diseases properly, to find causes and treatments.

RE

suggest to 'write a comprehensive differential diagnosis list of other diseases and conditions'

It is unfortunately not that simple, because a lot of doctors do not know how to tests for some of the rarer conditions and wouldn’t know them if they fell over them.

So we need a complete guide as proposed that is easy to follow, and guides doctors through the differential diagnosis process step by step explaining what diseases and tests to do first and then how to proceed from there until all of the differential diagnosis list has been ruled out leaving only people who have the symptoms of CFS, ME but no known disease has been found that could explain their symptoms. These are the kind of people that will be used in the replicated study, so information can be found to see if this is one disease or several, and information can be collected from testing them that can be used to create definitions, and find causes and treatments.

On this page http://www.aafp.org/afp/2003/1201/p2223.html is the differential diagnosis procedure for Fever of Unknown Origin (FUO) this can be like finding the causes of CFS, ME symptoms a complicated procedure with many diseases and tests to do, you will see that it lists all the causes, broken down into different groups and towards the end of the page is a chart that explains very clearly step by step what tests to do and in what order. This is what we need for people with CFS and ME symptoms, almost all other diseases have this; we desperately need it for us as well.

Vitamin D deficiency is medically considered a disease, it will be on a new differential diagnosis list and is already on the IACFS/ME list.

RE No, until replication studies have been done on pure cohorts it is impossible to put out accurate information. We have to do things in a proper scientific manner replicated studies first.
getting really good information is going to take time. In the interim, it would still be better to put out flawed information (regardless of who does this, CFSAC or someone else) rather than let doctors continue to infer from the vacuum or the CBT/GET/counseling recommendations that ME/CFS is a wastebasket/hypochondriac condition.

We have already decided that we are asking for CBT and GET to be removed, and that CFS and ME must be immediately officially declared to be physical illnesses, and the Psyc rebuish scraped

Telling doctors "these patients have a serious, terribly debilitating, organic disease, and it may be useful to test for NKCC, use SPECT scans, test for pathogens, check for OI/NMH/POTS, look into sleep dysfunctions, do treat their pain, watch out for PER, etc." is better than telling them nothing. And much better than letting CDC, Kings, Barts, Mayo, and Emory department of psychiatry tell them balderdash.

Getting the complete differential diagnosis list and testing completed is a first priority, and it will be compulsory for all patients to be offered this. If this number one priority is excepted, it will only take a couple of months before it is completed and is available on the CDC website, so all these tests will be being done very soon if we can get this excepted, the differential diagnosis guide will of course include testing, for Oi/NMH/POTS, sleep dysfunction pathogens etc, because all these things can be caused by other diseases that mimic CFS and ME. We already plan that all Psychiatric balderdash will be repelled by making CFS and ME officially a Serious Physical illnesses!

All previous CFS and ME definitions will be made redundant when one is created based on the replicated science study, because this will be based on replicated science and none of the others are!

All the best

 

[Bob]

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

rlc said:

No, until replication studies have been done on pure cohorts it is impossible to put out accurate information. We have to do things in a proper scientific manner replicated studies first.

getting really good information is going to take time. In the interim, it would still be better to put out flawed information (regardless of who does this, CFSAC or someone else) rather than let doctors continue to infer from the vacuum or the CBT/GET/counseling recommendations that ME/CFS is a wastebasket/hypochondriac condition.

Telling doctors "these patients have a serious, terribly debilitating, organic disease, and it may be useful to test for NKCC, use SPECT scans, test for pathogens, check for OI/NMH/POTS, look into sleep dysfunctions, do treat their pain, watch out for PER, etc." is better than telling them nothing. And much better than letting CDC, Kings, Barts, Mayo, and Emory department of psychiatry tell them balderdash.

jspotila said: ↑

OPPOSE: Please, please remove this item. It is impossible. The CFSAC is governed by the Federal Advisory Committee Act. It has no powers to issue press releases or educate anyone. This cannot be accomplished. Asking for it just shows that we are either pie-in-the-sky dreamers or ignorant of how an advisory committee is obligated to operate under law.

​

​

other committees do education? cf autism committee post 25? What's different about them, from us? (this is a serious question, not argumentative - I am confused about this and asking for clarification so I can understand)

I don't know what the facts are re committee powers.
But surely we can ask the CFSAC to make recommendations re education anyway, if they can't carry out those activities themselves?
I'll await further discussion and/or some wording.

 

[usedtobeperkytina]

I'm sorry, last two posts did not take into consideration the discussion on the last two pages.

Might I recommend this for #4:
When a new clinical diagnostic criteria is reached, the CDC should change the name of the disease to reflect the biological abnormalities and known pathologies. This may end up being ME or another name, but it should not be "CFS" as that name does not reflect the research that reveals the biological underpinnings of the disease. Until then, the CDC website should state that ME is a subset of CFS patients with the additional criteria of _______________, __________________, and _____________________.


Ember, does this help?The goal here is to find some wording that we all can agree to. I hope the above example is closer.

One thing I think we should realize is that ME has its own baggage. Now, it is better than CFS, as we really only have the two choices (setting aside PVFS since not all of us can prove a virus was the trigger). The two choices as names for the disease now are ME or CFS. And both have problems. ME has been tainted by Wessely and his gang. Despite its medical definition and classification, it got a bad wrap in the UK. I want a better name for them also, one that does not carry the bias and stigma that has now been associated with it. The ME term does not help in changing public perception over in the UK.

And, ME has the problem of no use in the US, no research in the US, etc. No criteria for getting disability. Getting government agencies to study a lesser disease that isn't even reported in the US is not going to happen. Getting doctors in the US to diagnose people with a disease that isn't even listed on the CDC website and for which they learned nothing in medical school is not going to happen.

And, whether we like it or not, ME has been connected to CFS through the studies that use both terms and then refer to the patients with Fukuda.

So, while ME is the better of the two options we have now, it still carries lots of baggage. I don't even have to explain the problems with the term "CFS."

We need a totally new name for the one disease, and then have subgroups, types or stages, as happens with other diseases. Notice, for example, that MS is split into four types: http://www.mayoclinic.org/multiple-sclerosis/types.html Same name. Same disease, but a different manifestation in the patients, so they are grouped by the symptom presentation.

Why, oh why, does my disease always have to be treated different? Why can't I have a normal disease?

I think maybe we can agree that either ME should be the name and coding used with the CCC or ICC or a new definition with levels of severity for subgrouping. Or, we can agree that a totally new name altogether is needed.

Tina

 

[Bob]

CDC doesn't think it created a separate "empirical" definition, so these discussions tend to be circular.

Rather than asking not to use this 'definition', then, could we ask them to stop using that instrument to help assess patients?

I think there were other objections to this item as well...
I think someone said that it had already been recommended by CFSAC.
But alternative wording can be suggested and then commented on.

 

[Bob]

We are all now agreed about CBT and GET. It's unanimous! They both have to be removed from the CDC's website and literature! (As per our latest list.)

 

[Bob]

Also, there should be two definitions, one for research and one for clinical use. One is more narrow, the other is broader.This is the way it was done in finding the biomarker and cause of AIDS. For research, a narrow definition must be used. The broad definition is appropriate for clinical use.

Agreed. I've consistently said that we should focus on the research criteria, because I can't see us reaching much consensus on a clinical criteria. However, I do like rlc's approach, which would cover clinical and research.

Also, there should be a scale of severity. We can use the self-report chart in the primer. This will help in research. And it will help patients get disability. So, the new disease name, should have types, like other diseases. Or levels. "I have level 6 ME," for example. The primer uses a functional capacity chart: http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf (see page 37). That can be used in research to subgroup on severity level.

I need wording Tina, if you are making a suggestion.
The ICC also caters for a different range of symptoms, with its 'atypical ME' etc.

And I think the primer uses the CCC for diagnosis; please correct me if I am wrong. Seems the CCC has more traction. That might be a recommendation that gets lots of support of scientists outside of CDC.

I'm in favour of recommending both CCC and ICC get used in research. rlc is only in favour of ICC.

The goal that the Coalition has is not to distinguish between CFS and ME, because as many mentioned here, those who meet one of the ME definitions would also meet Fukuda. The Coalition 4 ME/CFS's goal is to get "CFS" gone completely. As long as it is seen as different, then it will continue to exist. And as long as it continues to exist, then ME will not be recognized in the US. One disease, but with subgroups.

Yes, as discussed, this is a very contentious issue, which we won't reach consensus on, on PR.

Breast cancer is one group. However, for research, you have stages of it. Stage 1, stage 2, etc. Trying a new therapy would require the researcher to tell what stage the patients are in. This is why my mother had a different treatment for her breast cancer because it was in 4 out of 10 lymph nodes tested. Had it been more, then another treatment protocol would have been recommended. Less, and another treatment protocol would have been recommended. If level of disease can be used in research, although it is recognized as one disease with one name, so can our disease.

Also, in breast cancer, there are different types. Some are more genetic than others. Some are estrogen sensitive, others not. So, when doing research, the researcher will often do research on just those who have the breast cancer gene. Same disease, same name, but subgrouped in research to find more appropriate treatments.

The term and the current Fukuda (and Empirical) for CFS must go. It has not served us well in patient care, public understanding, getting disability benefits and in research. It is obsolete. Even research of the Fukuda patients show it is a neurological disease, not a list of symptoms under "chronic fatigue."

Again, that's not universally agreed, but we don't have to include such areas in our list that we are creating. We can avoid issues like this.

If you have any suggestions in this post Tina, or suggestions for alternative wording, please provide them so others can consider and discuss them.

 

[ukxmrv]

Hi Tina and everyone doing great work here,

In my experience there may be a problem with saying "low level body activity, gradually increasing but always staying within tolerable limits" is the gradually increasing part. One of my earlier disasters with UK health care was in a graded exercise program.

The problem(s) we face is that providers don't understand that post exertional problems can take 0-72 hours to appear. Saying "staying within tolerable limits" would mean different things to different people. For the people who sell GET programs the tolerable limits in my experience are not the same as the PWME experiences. We need to make sure that there is no room for misunderstandings.

That's why I think all references to GET or exercise programs as good or a start should be removed. Spending 1 minutes on leg lifts whilst reclining (as the example) has always been a pointless waste of time for me. Someone who can start at such a low level won't be having a socal life or able to self care. One minute on leg lifts is enough to cause pain for me at night. I've never been able to find an exercise that works even in small amounts consistently and sometimes I don't realise until 2 days later - and it begs the question - well why would I bother?

Who is this person who could start with one minute leg lifts and then hope to progress to anything with a point and has the time and energy to sacrifice on leg lifts? Would their time not be better spent on something that they enjoy that could lead to happiness?

ME patients cannot exercise (Prof Ramsay wrote about this so well) and they should be warned over what will happen if they do. Suggesting that someone starts with a small amount needs to be questioned as to how useful it would be. Everything that's said about ME should have a reason. If we mention exercise it needs to be thought through with a fine toothed comb.

I'm not trying to argue, put anyone down or say that people here, such as yourself, have anything other than the very best of intentions. Those of us who have survived exercise programs may have a different view and just see some traps that we have fallen into before.

 

[WillowJ]

I think there were other objections to this item as well...
I think someone said that it had already been recommended by CFSAC.
But alternative wording can be suggested and then commented on.

I haven't made it through all the pages yet! This applies to something rlc said to me also.

rlc, I know what differential diagnosis is. but there are some diseases which cannot always be diagnosed for certain (or cannot be diagnosed at all points in time) for all patients. for example, Lupus, may take some years to develop to the point that the tests we have available can say yes, this patient has Lupus. Another example: EDS-III is very difficult to diagnose and some patients may end up with a "you definitely have some kind of connective tissue disease" diagnosis. As ME/CFS also has connective tissue components, this is not useful as a differential diagnosis. (although many patients are currently thought to have both EDS and ME, though it's a bit hard to say what exactly ME is at this point)

So it's not that simple: just test for everything and then know what disease a given patient has or doesn't have. Rather, all our tests have limitations. They are not perfect.

 

[WillowJ]

but I'm not at all disagreeing as to the process of creating a huge list as good as it can be made and testing everyone (so far as is possible; Alex mentioned some limitations to this which are certainly valid); I simply think we should moderate the terms in which we describe it.

 

[Bob]

Might I recommend this for #4:
When a new clinical diagnostic criteria is reached, the CDC should change the name of the disease to reflect the biological abnormalities and known pathologies. This may end up being ME or another name, but it should not be "CFS" as that name does not reflect the research that reveals the biological underpinnings of the disease. Until then, the CDC website should state that ME is a subset of CFS patients with the additional criteria of _______________, __________________, and _____________________.

Is that a suggestion for discussion Tina? I wasn't quite sure if that's what you are proposing.
That would fit in nicely with our current item which asks for a new name:

2bi. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

We need a totally new name for the one disease, and then have subgroups, types or stages, as happens with other diseases. Notice, for example, that MS is split into four types: http://www.mayoclinic.org/multiple-sclerosis/types.htmlSame name. Same disease, but a different manifestation in the patients, so they are grouped by the symptom presentation.

Our current list provides a recommendation for a new name, without specifying the name. I think it's best to leave it like that, because we aren't all going to agree on a name on this forum.

I think maybe we can agree that either ME should be the name and coding used with the CCC or ICC or a new definition with levels of severity for subgrouping. Or, we can agree that a totally new name altogether is needed.

I think we all agree that ICC defines 'ME', because that's factual, in that the ICC says it defines 'ME'.
Beyond that, I think we should ignore the name issue in this thread.

As for the subgrouping, we need wording if you are making a suggestion for inclusion.

 

[Bob]

rlc, I know what differential diagnosis is. but there are some diseases which cannot always be diagnosed for certain (or cannot be diagnosed at all points in time) for all patients. for example, Lupus, may take some years to develop to the point that the tests we have available can say yes, this patient has Lupus. Another example: EDS-III is very difficult to diagnose and some patients may end up with a "you definitely have some kind of connective tissue disease" diagnosis. As ME/CFS also has connective tissue components, this is not useful as a differential diagnosis. (although many patients are currently thought to have both EDS and ME, though it's a bit hard to say what exactly ME is at this point)

So it's not that simple: just test for everything and then know what disease a given patient has or doesn't have. Rather, all our tests have limitations. They are not perfect.

rlc WillowJ,
I agree with Willow... I've added Willow's wording as an option for us to continue discussing.
I agree with rlc's intentions, but I think Willow's wording sounds and looks better, and aims for the same outcome.
We could possibly have both, by starting with Willows wording and then adding something like "with the aim of finding all possible (or 100%) differential diagnoses."
What are your thoughts rlc, Willow? And anyone else?

 

[WillowJ]

RE

suggest to 'write a comprehensive differential diagnosis list of other diseases and conditions'​

It is unfortunately not that simple, because a lot of doctors do not know how to tests for some of the rarer conditions and wouldn’t know them if they fell over them.

this is meant to be an edit of just the italicised section from:

1a. An independent panel of Diagnostic experts will be created to write a 100% complete differential diagnosis list of all other diseases that can cause the symptoms of ME and CFS, ...

rendering

1a. An independent panel of Diagnostic experts will be created to write a comprehensive differential diagnosis list of other diseases and conditions that can cause the symptoms of ME and CFS,...

with the bit about a guide explaining how to accomplish differential diagnosis left intact.

that may have bee unclear, sorry about that.

definitely time for me to be asleep! talk to you all later

 

[Bob]

Do we stick with simple:

7. Promotion of CBT and GET as therapies for CFS patients will be removed from CDC literature, toolkit and website.
(should we be specific about what we want removed?)


Or do we add information (i.e. a briefing doc), such as including extra info such as:


7ii. The CDC to remove all reference to CBT and GET from it's website, and clinicians warned that these therapies do not help the majority of CFS/ME patients, and a high proportion of patients anecdotally report being harmed.
The PACE Trial* demonstrated that CBT is ineffective at reducing phsycial disability in secondary care patients.
The PACE Trial demonstrated that only approximately 13% of secondary care patients respond to CBT or GET, but the trial excluded severely affected patients.
The FINE Trial* demonstrated that severely affected patients do not respond to therapies based on CBT that include components of GET.
In UK patient organisation surveys*, a high proportion of respondent reported being harmed by both CBT and GET, when administered in ordinary clinical settings, outside of the highly controlled setting of a government-funded clinical trial.
(*I will provide references for all of these assertions, if we take this forwards.)

And then add some of Tina's comments:
This is very obvious that the term used for other diseases, as far as helping a person's attitude, is called counseling. CBTis not the appropriate term for helping someone cope with the blow of knowing they have a life-altering chronic illness. Which is why the term used in the diabetes section is counseling, not CBT. However, what is under CBT in the CFS section is not counseling to help someone adjust emotionally and mentally to having a chronic debilitating illness. What is described there is instructions on lifestyle changes to prevent increasing symptoms. Just like a diabetic is told to exercise and change their diet to prevent an increase of symptoms, ME/CFS patients should pace their activity. This does not require someone to give CBT. It's medical advice given from a nurse of physician, just as diet and exercise instructions are given to diabetics by a nurse or physician.

Why does everything have to be different with my disease. It is like I am in a perpetual "opposite day."

It isn't in our testimony, but we also take issue with GET. The problem is the graded or gradual part of it implies continual until the person gets back to normal. Well, normal may never come. So, what ever "exercise" program is used may have to stop lower than normal. We also take issue with the term "exercise." One of the definitions for "exercise" is mental or physical exertion. And this is the way most people think of the word. However, we know an ME/CFS patient should not exert themselves or they will exacerbate the symptoms.

A better term would be low level body activity, gradually increasing, but always staying within tolerable limits. Someone else may come up with a shorter term than that. The CDC website does explain the low level with an example, which is good. But the word "exercise" is used with aerobics, lifting weights, etc. For us, in the beginning, we are talking about 1 minute of leg lifts while reclining. Actually, as the primer says, no protocol of "exercise" should take precedence over self-care or home-care activities.

 

[Bob]

This is now an OLD list - please use the latest list here:
http://forums.phoenixrising.me/inde...r-what-should-we-do.17972/page-20#post-276998

____________________________________________________________________________

Newly added text, for consideration, is in blue.
Our comments and questions from the discussions are in red/brown.


1a. An independent panel of Diagnostic experts will be created to write a (100% complete differential diagnosis list of all other diseases) [or] (a comprehensive differential diagnosis list of other diseases and conditions) that can cause the symptoms of ME and CFS, they will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this.
Clinicians and researchers who have already created differential diagnoses lists, or have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel. Such as Dr Byron Hyde, Dr Shirwan A Mirza, the writers of the ICC and the writers of the IACFS/ME etc.


Alternatives 1a:

1ai. An independent panel of Diagnostic experts will be created to write a (100% complete differential diagnosis list of all other diseases) [or] (a comprehensive differential diagnosis list of other diseases and conditions) that can cause the symptoms of ME and CFS, they will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this.
Drs Byron Hyde and Dr Shirwan A Mirza because of their track record in finding the misdiagnosed patients in the CFS group must be included in this panel either directly or as consultants.
Clinicians and researchers* who have already created differential diagnoses lists, or have atrack record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel.
(*References = Hyde, Mirza, ICC, IACFS/ME toolkit, and any others?)
This guide will be placed prominently on the CDC web site replacing its existing testing requirements.

1b. It will then become compulsory for all patients who have suspected CFS or ME or have already been diagnosed with CFS or ME, to have the testing recommended in the guide that is created by this independent panel.

Alternatives 1b:

1bi. It will then become compulsory for all patients who have suspected CFS or ME or have already been diagnosed with CFS or ME, to be offered the testing recommended in the guide that is created by this independent panel.

1bii. It will then become advisory for all patients who have suspected CFS or ME or have already been diagnosed with CFS or ME, to be offered the testing recommended in the guide that is created by this independent panel.[/QUOTE]



2a. A new definition will be created, that will be based on independently replicated science, the new definition will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.

A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH, (serum LPS, cytokine panel, dim cell/bright cell ratio (types of NK cells), elastase) etc. Tests for all anomalies will be performed in a replicated manner on all the patients in all the groups.

When creating the new criteria, it must not be assumed that the ME/CFS population represents a homogeneous population, and so research into sub-typing and cluster analysis of symptoms and biomarkers should be considered, and sub-groups should be created within the criteria, if appropriate.
From this information a new definition will be written, or two definitions, if it found to be two different illnesses.


Alternatives 2a:

2aii. A new definition will be created, that will involve a panel of physicians expert in the field of CFS/ME, and who have an understanding of the physiological abnormalities in CFS/ME patients.
The new definition will be based on independently replicated published scientific papers in relation to the physical symptoms, and physiological abnormalities in CFS/ME patients.
The new definition will exclude patients who test positive for all other diseases, as per item no. 1., using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.

A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH, (serum LPS, cytokine panel, dim cell/bright cell ratio (types of NK cells), elastase) etc. Tests for the most significant of these anomalies (as decided by the panel of experts) will be performed in a replicated manner on a representative selection of selected cohorts of patients in order to create the diagnostic definition.




When creating the new criteria, it must not be assumed that the ME/CFS population represents a homogeneous population, and so research into sub-typing and cluster analysis of symptoms and biomarkers should be considered, and sub-groups should be created within the criteria, if appropriate.
From this information a new definition will be written, and further definitions, if it found to be more than one different illnesses.


2ai. A new definition will be created, that will be based on independently replicated science, the new definition will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.

A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for all anomalies will be performed in a replicated manner on all a representative selection of all cohorts of patients in all the groups. From this information a new definition will be written, or two definitions, if it found to be two different illnesses.




2bi. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

Alternative 2b:

2bii. When a new clinical diagnostic criteria is reached, the CDC should change the name of the disease to reflect the biological abnormalities and known pathologies. This may end up being ME or another name, but it should not be "CFS" as that name does not reflect the research that reveals the biological underpinnings of the disease. Until then, the CDC website should state that ME is a subset of CFS patients with the additional criteria of _______________, __________________, and _____________________.


2c. Adequate Funding will then be provided to further research patients that fit the definition/definitions created by this process to find diagnostic tests, causes and treatments.

2d. The CFSAC and the Patient Community will be regularly updated on the progress of this project and the details of it.




3a. All CFS and ME patients in the USA will be officially recognized as having a serious Physical illness until such time as the science in sections 2a and 2b has been done and the answer to what this illness/illnesses is has been found.

3b. All US CFS and ME patients will be given the legal, medical and insurance rights that other patients with a serious Physical illness have.

3bi. CDC will advise/notify doctors and insurance companies, that CFS must be treated as a biomedical illness, and not as a psychiatric illness.

3c. The CDC will write on its website that CFS and ME are serious physical illness, until such time as the science in articles 2a and 2b has been done.




4. 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.

Alternatives 4:

4i. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC will recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC, CCC) from CFS (Reeves, Fukuda).
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.

4iii. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC should recognize the ME-ICC, as the case definition for ME, until such time as (articles 2a and 2b have been completed and) a new definition has been written based on replicated science. Until then ME-ICC will be used to distinguish ME from CFS (Reeves, Fukuda).

Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.

4ii. Given that Fukuda states that subtyping is required and that Fukuda fails to acknowledge the hallmark PEM/PENE, patients that meet the ME-ICC or CCC should be removed from the Fukuda defined patient population and referred to as ME.



5. More research funding for the biomedical model of illness, using CCC and ICC alongside Fukuda for all research, until such time as the new definition based on replicated science is completed.

Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.

Alternatives 5:

5i. More research funding for the biomedical model of illness, using CCC and ICC for all research, until such time as a new definition based on replicated science is created.
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.


6. Research trials be carried out into Rituximab, and related pharmaceuticals, with these researchers communicating with Drs Fluge and Mella to help coordinate the research and provide details of how they select patients for trials.



7. Promotion of CBT and GET as therapies for CFS patients will be removed from CDC literature, toolkit and website.
(can we be specific about what we want removed?)

Alternatives 7:

7ii. The CDC to remove all reference to CBT and GET from it's website, and clinicians warned that these therapies do not help the majority of CFS/ME patients, and a high proportion of patients anecdotally report being harmed.
The PACE Trial* demonstrated that CBT is ineffective at reducing phsycial disability in secondary care patients.
The PACE Trial demonstrated that only approximately 13% of secondary care patients respond to CBT or GET, but the trial excluded severely affected patients.
The FINE Trial* demonstrated that severely affected patients do not respond to therapies based on CBT that include components of GET.
In UK patient organisation surveys*, a high proportion of respondent reported being harmed by both CBT and GET, when administered in ordinary clinical settings, outside of the highly controlled setting of a government-funded clinical trial.
(*I will provide references for all of these assertions, if we take this forwards.)

7. CBT can be an optional therapy for CFS patients, to help with the emotional issues of having a physical illness, and GET should be removed from CDC literature, toolkit and website.

7i. CBT to assist coping can be an optional therapy for CFS patients but not for the purpose of modifying hypothesized dysfunctional illness beliefs, and GET should be removed from CDC literature, toolkit and website.




8. The CDC will 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.
(should we be more specific about this and provide specific information about what we want removing, or at least examples?)

Alternatives 8:

8i. "The CDC will remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS."

8ii. The CDC will conduct a systematic review of all its past research, and removed from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, any information and research that is based on on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS. Any unretracted or unremoved research, which is based on the previously described criteria, must be clearly marked as outdated.

8iii. The CDC will remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS.



9. 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), and the requests we outline, the CFSAC should re-issue.

Alternatives 9:

9i. 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 ME/CFS policy in a clear and concise manner.

9ii. 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), and the requests we outline, the CFSAC should re-issue recommendations that address current priorities in ME/CFS policy in a clear and concise manner.



10. The CDC will produce a state-of-knowledge article, updated annually, in relation to ME/CFS, so that the older research and current views can be put in perspective. This will be an annual review article to be published.



New:

11. The CFSAC should aim to educate physicians, schools, social services, and the public through any means possible to it, including making recommendations.
(The reference to eduction has been placed back on the list, but with different wording - whoever first opposed the original item re eduction, please can you repost you objection if still appropriate.)


12. CDC should cease use of the surveys developed and presented in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005.
(Again, this has been reposted but with different wording. If the original objections still apply, then please repost them.)


Alternative 12:

12i. CDC should cease diagnostic use of the surveys in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005, and abandon the scoring system described in that paper (and in the Wagner et al. 2005Psychometric Properties study). CDC should replace the Chalder Fatigue Scale with a scale able to assess severe long-term disease (c.f. a paper by Jason, need reference).