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

This is where we are up to at the moment, with some items currently in ongoing discussion, and nearly all items have been opposed by rlc in an ongoing discussion.

After we have rlc's (succinct) feedback, we'll see if we are able to work out any wording that enables us to include any of these items, alongside rlc's wishes. So I'd like to try to keep both rlc, and those with other points of view, happy at the same time, with careful use of wording and phrasing. I don't know if that will be possible.

Beyond that, we will have to discuss which of the items should be prioritised to go forwards.
But many of them might change drastically and considerably after we've attempted to reword them anyway.


________________________________________________________________________


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.


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.
Needs rewording.

 

I've sent ric a private message asking for the CDC reference that I need. I hope he'll respond.

 

OK, thanks Ember.
Don't worry about hurrying with it...
Take your time... I'll leave the item there until we find further info.

 

Well, they started off with how to go about finding a new definition. (Again, I think that was a waste of time as the CDC is already doing that.) The point was made that other professional orgs needed to be involved for it to have credibility and be used. But, the concern was that these folks have no clue and their input may mess it up. So, Dr. Lee suggested a first step of educating them, possibly two conferences. One to educate them and another to come up with definition.

If they can do it as part of creating a definition, then they can do it anyway. No details on what agency would do that. The woman in the military uniform (whose agency starts with an "H") seemed to be a likely place to go. And as you said, Jennifer, no confirmation it would be approved. However, if it is coming from the DFO, which works closely with Koh, then maybe it can happen. We can't ignore that we must have the cooperation and good will of these administrators to get anything done. If it is her idea, then maybe she and Koh can find a way.

Tina

 

I'm just going forwards with this project without really consulting anyone about the process, and no one has protested so far, so I'll carry on. But if anyone isn't particularly sure, or happy, about what I'm doing then please feel free to say. I haven't got fixed plans, and I don't want to monopolise the thread. It's purely a community project as far as I'm concerned, so all input is welcome. If at the end of the process, we can come up with any agreed proposals, then we'll need to discuss where to go from there. I would suggest putting a final short-list of suggestions/proposals to the wider PR membership to comment on, in a new thread, before we finalise it. And then think about if we want to write a letter to the CFSAC, in the name of Phoenix Rising with Cort's cooperation, assuming he'll be happy with it. And also maybe we should think about coordinating what we have to say with the letter from the organisations that has been discussed earlier in the thread. I don't know how that would work, but I suggest at the very least, avoiding conflicting or contradictory suggestions or info, for all the reasons discussed. But that's all up for discussion.

 

Hi Medfeb and Bob, obviously we can’t fix all these problems overnight and any changes will take time, but we need to focus on what will stop people dying and fix the main problems straight away, the main problem is that because nobody is getting tested properly to see if they have other diseases, know body knows what is actually wrong with them and people are dying and suffering needlessly because of this, plus mixed cohorts in research.

So this has to be fixed as soon as possible.

So medfeb the patient you describe would with the way I propose still be going through the testing process to find out what was wrong with them, and I do agree that GET should be removed from the CDC website, and they should immediately stop promoting CFS as some kind of Psychiatric illness. Which will solve the problem of doctors refering CFS patients to psychiatrists.

I think we need to find a way to put an end to the CDCs plan for a new definition, because we know that they are going to be comparing the Faulty Fukuda definition to the Faulty Wichita study and not do testing properly to rule out all disease in any people they test so results will be based on mixed cohorts. They will then say that their definition is better then everybody else’s, and the ICC and CCC will never get used. It won’t help anyone anywhere and will mean that people die, and it will take another ten years to get them to write a new one.

If we argue for a replicated science study to base a definition on, if needs be the CDC (not that I like this option) could be involved testing one of the groups of people, but because their results will be being checked by other independent groups, they will soon be exposed if they do things wrong.

I do realize that I have been laying out goals for all advocacy as well as for the CFSAC, but I think that it is important to make suggestions about advocacy at the same time as for the CFSAC because we need the approach to be coordinated.

Anyway bob no more long post I have said what I need to say, below I will make my suggestions for some changes to your CFSAC suggestion, with Brief (Ha, ha) explanations.

I will then do a new post with them set out in a priority order starting with the most important things we need to change based on your suggestions, plus one other suggestion which I think people will like.

I do not object to CBT being OPTIONAL, some patients do find it useful in helping to cope with emotional issues related to have a serious physical illness; it is a proven treatment that is given to the likes of cancer patients. GET however there is evidence that it can be very detrimental to some ME patients, so should not be used.

So I think 1 should read

1. 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.

Researchers are not going to happy with using three different definition at once for research, but for the sake of getting some agreement going in the community I propose that 4 should read.

4. The CCC and ICC should be used alongside Fukuda in government research, until such time as a new definition based on replicated science is created.

I think 5 should read,

5. 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.

I feel that 4 and 5 are pretty much saying the same thing so could be made into one request! Along the lines of.

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

I have read that the Norwegian researchers are not just relying on the definitions but are very careful to rule out all other diseases so that they don’t kill people. So I think that 6 should read.

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.

IACFS/ME tool kit and hfme are incomplete and full of faults, and the CDC have a proven track record of not being able to do this, so I think 7 should read.

7. 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 CFS, they will write a step by step easy to follow guide on how to rule out all the other disease 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. It will then become compulsory for all patients who have suspected CFS or have already been diagnosed with CFS to have the testing recommended in the guide that is created by this independent panel.

This is fine to include, but it won’t really achieve much because we will still be left with the CDC defining CFS as a disease with no physical anomalies so therefore it is a psychiatric illness.

Yes a new definition should be created, but the CDC has a bad track record, and its plans to compare the faulty Fukuda definition with the faulty Wichita study are laughable, it will also be repeating the problem of not using replicated science by that I mean http://en.wikipedia.org/wiki/Replication_(scientific_method)

So I think that 13, 14, 15 and 16 should be changed to be

13. A new definition should 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 7 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 patient, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for all these anomalies will be performed in a replicated manner on all the 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. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

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

15. The CFSAC and the patient community will be regularly updated on the progress of this project and the details of it.

This should have been done already anyway, so I have no objections to this, what they find should then be compared to this new list that we are creating. And a new policy created.

As the CDC on its own CFS website says that Myalgic Encephalomyelitis is a different disease to CFS it should be providing information on what it is, see,

Found at the bottom of this page http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

So unless the CDC has a definition for ME that they have forgotten to tell us about, the only options are to use the Ramsey definition, the Dr Byron Hyde Nightingale definition, or the ICC, personally I think the Dr Hyde definition is the best, but I do realize that we have fat chance of getting agreement on that, so the ICC being the most recent and written by the most doctors will have to do until a new one is written. So I agree with 18.

However wanting this does contradict what we are saying here a bit,

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

I think we might need to be stating a case for splitting ME from CFS using the ICC but the community is likely to disagree about this???? So maybe we should just leave it and just aim to get the CDC to admit that they already recognize ME as a separate illness and to do something about it. And we can do something about it from there.

All the best

 

My Suggestions for the CFSAC


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, 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.

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.

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 etc, etc. Tests for all anomalies will be performed in a replicated manner on all the 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. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

2b. 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.

2c. 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.

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.

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.

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. 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.

8. 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.

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.

 

Hi Ember RE

Is this meant for me??? its RLC not RIC and people sometimes get confused with this,


If you have sent me a PM I have not recieved it, so try again


All the best

 

Point 7 might be better as:

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.

Point 8 I have noted before is probably against CDC policy if its their own research. This is why I suggested we should get them to comment on the older research so it isn't taken as current views. However I do think that any recommendation to use CF/IF/Oxford/Reeves etc should be removed as well as any claim that meta-analysis of CBT/GET is shown to be effective if they have such a claim (its been a while since I read their site and its changed anyway).

Bye, Alex

 

Hi Alex, RE

I have wtitten for 7

so that CBT is not seen as need for Psychiatric illness.

All the issues of CFS being portrayed as a psychiatric illness will be solved if articles 3a and 3b are excepted

All the best

 

rlc, thank you so much for engaging so constructively and agreeably with this process.
I think you've really added a lot of quality to the debate, and enhanced the process.
I think some of your latest comments are perfect/excellent.
Some slight tidying up of our wording will be needed, but we can work on that later.

rlc has incorporated all of my list into his, minus the ones we've already deleted.
In my opinion he has enhanced much of it, but we all need to discuss rlc's changes.

I'm going to ditch my list now, and use rlc's now, for us all to work from, going forward.
So we all need to re-submit our objections, and comments for rlc's new list (me included.)

Again, if we don't all agree, then we won't use them.
I know some people will want to adjust the wording...
That's no problem... Let's continue the discussion.
This will take a while to get right, to everybody's satisfaction.

Edit:
(I haven't had a chance to consider all of rlc's proposals thoroughly yet, so please don't consider that using his list is my personal endorsement... This is a work in progress, and I just think that his list moves us forwards.)

 

rlc, I'm going to comment on some of the specifics of your suggestions now...

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:

Perfect! Thank you for that. I think that will be agreed on by everyone.
I think we might need some slightly more explanatory wording re 'replicated science', but we can work on that later.

Excellent! Perfect!


I think maybe your no 3. should be split into two? What do you think?:

3i. 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.

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

 

Can people comment on the following please:

Is your preference for 4 and 5 to be included separately, or just to include 4/5, as per the following? (we can discuss how acceptable the wording is separately to answering this question):

And which of the following wording is most preferable:

 

Does anyone oppose either, or both, of these?:

I think they are both reasonable, and alex's is worded preferably for me, but I'm not sure that we should be reasonable about this subject?

 

Alex, any chance of you incorporating all of that into complete suggestions/proposals? (Including rewriting, or formally 'objecting' to, point no. 8, if you want to?)

(It's all very helpful, but I can't write out other people's suggestions.)

 

The CDC has already recognized that there is a distinct biomedical disease called ME. So I'm following here Mary's suggestion (I think) and claiming that ME should be defined by the ICC. I've added the CCC too, following published guidance by Dr. Carruthers, lead author of both definitions.

"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 and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC, CCC) from CFS (Reeves, Fukuda)."

Here's the relevant CDC quotation (with emphasis added):

And here are two relevant quotations from Dr. Carruthers' recent article in the Jounal of IiME:

The first quotation by Dr. Carruthers, in its entirety, specifies the fatigue type that is called PENE as the distinguishing characteristic of ME. So I'll post the full quotation as well:

 

Great work Ember.

So this is Ember's new suggestion, which would replace our earlier one (see no. 4, below.)

Could we have feedback for preferences, and any objections, to the new suggestion please.

I see problems with this Ember, possibly only because of the last few words: "distinguishing ME from CFS"
I think people may have problems with that. If there are objections you could consider removing those words.
Or we could say "distinguishing ICC ME from Fukuda CFS". I think that would be acceptable to me.

Ember, would you want this for all purposes, or would you be happy for it to be converted to a recommendation for research criteria, if there are objections?

Anyway, consider my points but let's wait for the feedback.


Edit:
My preferred alternative wording:
"That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct form that of CFS,” the CDC should recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing CCC ME and ICC ME from Fukuda CFS ."

 

The CDC and the ICC both claim that ME is distinct from CFS. I'll be curious to hear the objections.

 

Yes, I just re-read my post, and added the following:
Or we could say "distinguishing ICC ME from Fukuda CFS". I think that would be acceptable to me.

The reason I see objections is because of the politics of separating CFS from ME.
Many people do want that, but many don't want the two to be separated. Not in a clinical setting anyway.
So I just think we have to be very careful with our wording, as usual.

Edit 1:
Or: "distinguishing CCC ME and ICC ME from Fukuda CFS"

Edit 2:
I think I explained earlier that many people do not want CFS and ME separated in a clinical setting. This is partly because many patients with a 'CFS' diagnosis think that they would be thrown onto an even worse diagnostic scrap-heap than they are now, because a 'CFS' diagnosis would just become a psychiatric one, if 'ME' patients were given an exclusive diagnosis. So we need to incorporate these fears into our wording, to keep everyone on board, even if the fears are not scientifically based.

Edit 3:
So this is my preferred alternative wording (what do you think Ember?):

"That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct form that of CFS,” the CDC should recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing CCC ME and ICC ME from Fukuda CFS ."

 

How about “distinguishing ME (ICC, CCC) from CFS (Fukuda).” It says the same thing.