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Just Get It Right Patient Survey

Discussion in 'Institute of Medicine (IOM) Government Contract' started by usedtobeperkytina, Jan 6, 2014.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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  2. SOC

    SOC Senior Member

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    Great survey! I have a small concern that we have no idea whether this survey is being answered by true patients. It would be very easy for those (who are not patients) with a vested interest in the BPS model or the continuation of the view of this illness as strictly chronic fatigue to skew the results of this survey.
     
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  3. taniaaust1

    taniaaust1

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    When both ME and CFS, people of different illnesses are answering the same survey.. it makes it useless!!!. Would that be done with other illnesses, throwing them together with one in a minority group and then going by the results.. NOPE!! Doing this isnt much different to having two people with cant walk on a leg (one a stroke victim and the other who has a broken leg) and asking them what they want in a definition for their medical problem in the same survey. Its ridiculous.

    Lets do a combined definition for AIDS and MS next.. and ask before it starts in one survey combining these patient groups.. what do you want in a defintion?

    Two -there is supposed to be more CFS people then people that have ME re the different definitions... so that means ME could be really in the minority in this survey. It has ALWAYS been in the minority in mixed with CFS.. that's what has always been the whole problem. . So its not right or fair, its just lumping ME with CFS as per normal and what we need to get away from. (are you supporting now lumping these illnesses together as that is exactly what you are doing).

    The two groups could have different results. At what point is it going to be recognised that these two different groups need to be heard separently? otherwise its biased! Getting it right for patients if they want to do this.. lays in recognising that they are dealing with different diseases which they can not lump together!! They need to look at all responses and results of these separately.
     
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  4. taniaaust1

    taniaaust1

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    PANDORA

    I cant answer your survey as my answers are different depending on if its CFS being refered too or if it is ME being refered too.. and you do not state on it what it is about as you just say its for ME/CFS and I believe they are different things.

    How on earth are I meant to answer that for the above reason. eg I believe ME is a muti-systemic/neuro-endocrine-immune disease but probably CFS ISNT!!! I would never say that for CFS, CFS could be anything (including likely an issue doctors have missed)

    Truely how are any of us meant to answer this bodge job of a survey when we dont even know which it is about.

    I know I shouldnt but right now I feel angry at Pandora for not realising the issues of this survey with the way they are doing this.. making it to be a survey that as a ME person, I cant even answer (and maybe the CFS people shouldnt either seeing its just as wrong there too when many people are giving answers for ME). All those who dont believe they are the same thing.. how are we meant to do this?.....

    Its bad enough that IOM is doing both diseases together but Pandora isnt helping by encouraging the mixing of them by doing something like this. Two Surveys Please Pandora!!!.. One for the ME and one for CFS so we can correctly give our different answers of what we believe and think.

    Please someone bring this issue that many of us cant answer this survey as we dont know which (ME or CFS) it is about to IOM..
     
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  5. Bob

    Bob

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    IMO, the essential goal of the IOM must be to separate ME (a neuro-endocrine-immune disease with post-exertional malaise) from CFS (fatiguing illnesses of unknown etiology) and idiopathic fatigue and chronic fatigue.

    I strongly believe that the only useful outcome will be to define a 'subset' (which may or may not be a distinct illness) based on CCC. And if they achieve this then they may well have achieved some thing useful for us.

    So I think (if we are engaging with the process) that we must make it crystal clear to them that we consider ME to have a distinct set of symptoms (which possibly define a distinct illness, or may be a subset), and that we need it (ME) defined with a distinct set of criteria, separate from CFS/CF/ICF.

    Alongside a definition for ME, a definition for atypical ME (as per the CCC), CFS and/or CF/ICF will be needed to cater for all other patients.

    I'm not sure if all the questions in this survey (and the survey in general) allows for us to distinguish between ME (neuro-endocrine-immune with post-exertional malaise) from CFS (fatiguing illnesses with unknown etiology) etc.

    I think the survey should allow us to define which illness we are referring to, and which definition (set of criteria) we are referring to. Otherwise the results will be muddled and confused.

    I think it is essential that we, as the patient community, are crystal clear about the differences, and crystal clear that we need distinct definitions for the different subsets/illnesses. (ME/CFS/ICF/CF). If we aren't crystal clear then we can't expect them to understand our needs.
     
  6. Firestormm

    Firestormm Guest

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    @Bob

     
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  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Tania, and SOC, I think those are good points. Except that I would like to see ME defined properly, while "CFS" be completely discarded. It's just going to create too much confusion which the psychs will take full advantage of, to leave "CFS" out there redefined as Idiopathic CF.

    Bob, you talk about the need to be crystal clear with the terms. I agree 100%, but I don't think you are being clear. You are saying there are four subgroups or groups- "ME/CFS/ICF/CF", but those last 3 are more or less the same, by your own definition of "CFS"- "fatiguing illnesses with unknown etiology." Why redefine CFS as ICF, when we already have the term "ICF"? It's just going to create confusion that will haunt us all for years.

    If it's ME, call it "ME"; If it's ICF, call it "ICF" (and no more "CFS", especially not redefined as ICF!)

    There is a current PR thread on all this. I got very sick so haven't been able to keep up with it, but I'm going to go back there. I think we really need to hash all this out there and see if we can come to some kind of agreement or understanding. It's just going to be too chaotic as it stands right now with everyone going their separate way with the nomenclature.
     
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  8. Firestormm

    Firestormm Guest

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    @Bob And questions that follow... sorry am fading fast... can't be arsed to copy and paste :) They all talk about the importance of narrowing definitions, and of the importance of stuff...
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I answered the questions as best I can in PANDORA's survey. Then made liberal use of the comment box at the end.

    I said i was completely opposed to the IoM contract and it MUST be cancelled. I am only submitting comments in order to mitigate the damage this contract will cause if, God forbid, it goes ahead.

    I emphasized that I am extremely dismayed that PANDORA is not fully opposing the contract and the P2P, nor insisting that CCC be immediately adopted and 2 day CPET be used by Unger! These are non-negotiable!

    FWIW, I also expressed my opinion that a medical specialty needs to take responsibility for ME and I suggest Internal Medicine bc of the multi-systemic nature of the disease. I stated that I strongly feel that primary care medical doctors and osteopaths who are not specialists should NOT have responsibility for ME, since the disease is too complex.
     
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  10. Firestormm

    Firestormm Guest

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    I wonder if this should not have been confined to US citizens or at least it should have posed the question at the outset. Then again perhaps they can tell by IP address or sommink. Seems to be that after Fukuda and CDC you guys should be best determining your path or at least be at the forefront of it.
     
  11. Bob

    Bob

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    @Firestormm. I am aware that some questions specifically refer to the issues that I raised. IMO it would be helpful, from the beginning of the survey, to be able to clarify which subset/illness/diagnosis/criteria we are referring to.

    I'd have different answers to the survey questions depending on whether I was discussing ME or CFS or CF.
     
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  12. Firestormm

    Firestormm Guest

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    I done the survey and was a little kerfuddled at the notion of 'subsets'. I thought I knew what subsets were but now I am not so sure if we are all sharing the same meaning. I am not sure if ME should be considered a subset of CFS or ME and CFS a subset of Chronic Fatigue... From my point of view, I was thinking subsets might perhaps have related also to severities and to symptoms and to affected bodily parts... But in the absence of biomarkers I do find all of this rather, err, um, unnecessary really. Trying to determine separate diseases based on the knowledge we have... Oh dear. Anyway, I done the survey to the best of my understanding.
     
  13. Bob

    Bob

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    You are right, I wasn't very clear about my opinions. I didn't intend to be as this wasn't my formal submission to the IOM. I'd be happy to discuss my opinions in depth on another thread. Which is the thread you're referring to please Justin?

    I haven't specified (or didn't intended to specify) that there are four subgroups. There could be more or less. e.g. ME, atypical ME, mild ME, PVFS, sudden onset, and gradual onset could all be part of the mix. CF/UCF/ICF are probably the same. But what about chronic fatigue with a psychological basis, or that developed post-cancer-treatment? What labels should these be given? And then we have to consider what diagnosis will be given for a patient who currently falls within a Fukuda CFS diagnosis but outside a CCC/ICC diagnosis.

    We need to know what falls within the IOM's remit. If they are considering ICF/UCF/CF as part of their remit then they need to understand what they are and how they differ from CFS & ME, and why the differences are important.

    My personal main interest is getting 'ME' defined as a subset, or as a separate entity (i don't mind which, as long as it is clearly defined and distinguished), along with atypical ME, and mild ME. I haven't yet formulated my views with regards to how CFS/CF/UCF/ICF should be distinguished from each other or labelled or if CF/ICF/UCF are different terms for identical definitions. But this issue needs to be addressed.
     
    Last edited: Jan 7, 2014
  14. caledonia

    caledonia

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    I hope I'm getting this right. According to @Delia (who has a ton of political advocacy experience), the best political strategy for getting what we want (eventually) is to follow the Experts Letter. Adopt the CCC, which defines ME, but use the name ME/CFS. This is step one.

    The reason for this is US docs use CFS, and ME patients (if they even get diagnosed) have a CFS diagnosis under Fukuda. Very few docs know what ME is and very few patients have an ME diagnosis.

    So if CFS is in the name, then everyone diagnosed with CFS would be redefined under the CCC. If they meet CCC, they have ME/CFS (which is really ME). If they don't meet CCC, then they get a new diagnosis - ICF (or whatever). So then everyone under the CCC has ME, except it's called ME/CFS.

    Also at this point, I think Fukuda and Reeves would have to go away, because they only define CFS and not ME/CFS.

    Step two would be to convert ME/CFS to ME. CFS in any form goes away forever. I assume this would be at the next definition review, possibly using the ICC (and hopefully this will be sooner than another 20 years).

    =-==-=-=-=
    If you adopt the CCC and call it ME right now, then CFS is still in existence to plague us forever.
    =-==-=-

    Hopefully, Delia can chime in here and confirm or deny my understanding of this.
     
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  15. Bob

    Bob

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    I understand your reasoning.
    But the name issue is very contentious within our community, and not everyone in the ME & CFS communities will agree on the best approach or outcome.
    Some people are adamantly opposed to the use of the term 'CFS', whereas others are not at all familiar with the term 'ME' and don't identify with it, having always had a 'CFS' diagnosis.
    For me, the name isn't as important as the definition.
    In my own opinion (which often changes), the definition is the most important issue, and I think an appropriate name will follow if a good definition is adopted.
    (I'm not disagreeing with your reasoning or conclusions, but I'm just pointing out that not everyone agrees about the name issue.)
     
    Last edited: Jan 7, 2014
  16. Bob

    Bob

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    To everyone who is focused on achieving a distinct definition for 'ME' (e.g. based on the CCC or ICC), I think it's helpful to remember that the IOM, as part of its remit, will have to consider and define the wide range of fatiguing illnesses. The IOM will not be focused purely on 'ME', even if we are. If it ultimately agrees a definition for ME, it will also have to provide a definition for all patients who fall outside an ME diagnosis.

    Also, we might have fixed views about what ME is, but some of the committee members may not currently have any insight into ME or into how it can be distinguished from CFS/CF, and why it should be distinguished.

    Considering this, I think it will be helpful, in any formal submissions, for us to discuss 'ME' within the context of ME/CFS/CF.
    i.e. I think it may be helpful for us to discuss, or at least to keep in mind, how and why ME should be differentiated from CFS/CF.

    I'm not saying that we, as patients, should be expected to discuss all these details in scientific depth, but just that we need to be aware that they will be considering and defining 'fatiguing illnesses', and not purely ME, and perhaps our submissions need to be geared towards highlighting differentiations and the reasons for the need for a distinct diagnostic criteria.

    For example, for us to say "This is primarily an immune system disease" won't mean anything to the committee members, because they will be considering all/most types of unexplained chronic fatigue. When they look at any Oxford-based 'CFS' research which defines 'CFS' primarily as cognitive-behavioural disorder, they'll just decide that such a statement (i.e. "this is primarily an immune system disease") is incorrect. Instead, we need to explain that we consider that 'ME', as defined by CCC (or ICC/Ramsay/whatever), is primarily an immune system disease (or neuro-endocrine-immune or whatever), and that it is distinguishable, and different, to CFS and CF.
    Fukuda CFS patients are heterogeneous and so may or may not have an immune system disease. CF/UCF/ICF is highly heterogeneous and may or may not be an immune system disease.
     
    Last edited: Jan 7, 2014
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  17. Nielk

    Nielk

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    Currently, in the U.S., there is no official medical diagnosis called Myalgic Encephalomyelitis.
    My U.S. doctor who is originally Irish, told me that as a patient, I fulfill the ME diagnostic criteria but, in the U.S., he can only give a CFS diagnosis.

    This is part of the global confusion. I can keep saying that I have ME until my face turns blue but, I would still only receive a diagnosis of CFS here.

    I think that most people though when they talk about CFS, they are thinking Fukuda. When they say ME/CFS, they are thinking CCC and ME would be the ICC.

    The problem though is that our government/HHS has refused to adopt the CCC and ICC. We are then left with CFS as the only diagnosis.

    Historically, CFS as described by Fukuda, was supposed to describe the illness that the 'Lake Tahoe' cohorts suffered from except that......it didn't. That disease was sudden onset. It was viral. It affected the brain. It was very serious. It rendered the patients non-functional from one day to the next. It did not improve with rest. It did not improve with CBC/GET.

    I am not sure what the Fukuda criteria described. It most probably describes an 'idiopathic fatiguing illness'.

    I think that instead of using the names CFS, ME/CFS and ME, we would be better served by naming the disease we are taking about by their diagnostic criteria, such as the Fukuda disease, the Canadian disease and the International disease.
     
  18. SOC

    SOC Senior Member

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    I honestly don't know that we can distinguish patients with the clarity we all wish. For example, I consider true (by my definition) ME/CFS to include PEM/PENE, so I prefer the CCC and ICC definitions. My daughter and I fit both definitions at some point in our illnesses. Now, after lots of aggressive treatment, my daughter is fully functional and leading a normal life. She is not, however, cured. She has clear immune abnormalities, needs to take a number of symptomatic treatments, and continues to struggle to keep herpesviruses suppressed. She no longer has PEM/PENE. Does that mean she no longer has ME/CFS? If not, then what happened? Did she have ME/CFS but now doesn't but has something else wrong? If she relapses, will she have developed ME/CFS again? Or does she have ME/CFS, but is in some form of remission? In that case, PEM/PENE as an absolute requirement comes into question. It's puzzling, to say the least.

    I would really like there to be a clean definition of ME or ME/CFS (whatever we have to call it at this time) so that we can eliminate psychiatric fatigue, burn out fatigue, and a lot of clearly different illnesses from our research samples. I do think that it's possible to separate what we have from the crazy large cohort included in the Reeves/Empiric and Oxford definitions. However, I don't think we have the biomarkers we need to make an absolutely clear definition. It's possible (although very far from certain) that Fukuda CFS includes multiple stages of the illness or a closely-related but also undefined illness.

    My guess is that we need a research definition that includes immune dysfunction and PEM/PENE. That might exclude some people with what most of us would consider real ME. But that's okay. Plenty of other illnesses have stricter research definitions than clinical definitions.

    In that case, we would also need a less strict clinical definition, but one that still clearly excludes behavioral and psychiatric-only fatiguing conditions as well as other untreated fatiguing conditions. This would require testing (and treatment) for many autoimmune and endocrine conditions. Such testing (and treatment) is far from universal in diagnosing "CFS".

    This is NOT a simple task. Many of us with what we would all consider "true ME/CFS" by CCC or ICC definitions have comorbid psychiatric conditions (depression, anxiety) or endocrine conditions (hypothyroid, adrenal insufficiency) which should not exclude us from a clinical diagnosis of ME/CFS. We can't say that having any other illness, including psychiatric ones, should exclude a person from an ME/CFS diagnosis. But we don't want everyone who is "a little tired" included, either. It's a gigantic muddle.

    We need that biomarker desperately. But we can't find that biomarker without cleaner research samples. It's a catch-22 if there ever was one.

    IMO, we need to push for a strict research definition which may only catch the worst 75% of patients, but would probably include only patients. That group can be used to find our biomarker. In the meantime, we need a broader clinical definition that would allow all PWME to be treated, even if that broader clinical definition allows in some people we later find do not have "true" ME/CFS.

    If accepted clinical treatment for ME/CFS included aggressive treatments, more GPs would take the diagnosis seriously and do all the necessary testing and treatment to eliminate other known causes of similar symptoms.

    Right now, the official treatment is effectively nothing, so GPs feel comfortable throwing everybody they don't understand into our basket. They've parked people whose symptoms they don't understand (or can't be bothered to understand) in a corner where the doc doesn't have to do anything. Easy for them, miserable for patients. That's what we need to stop right now.

    We need to force our GPs into a place where they have to treat people with our symptoms, whether it's by treating non-ME/CFS conditions they aren't properly diagnosing currently, or by treating ME/CFS with treatments currently used by top ME/CFS specialists. No more sending us to the corner with the dunce caps on our heads to be ignored and/or humiliated.
     
  19. Bob

    Bob

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    In the UK the official (NHS/NICE) name is 'CFS/ME' but the 'ME' bit of the name was just introduced to placate the patient community. It's meaningless and is universally ignored in our health service. 'CFS/ME' is treated as a cognitive behavioural disorder in the UK.
     
    Last edited: Jan 7, 2014
  20. Bob

    Bob

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    @SOC. Great points. It is an exceptionally complex issue. However, the committee could create a graded set of criteria (as the ICC does with 'atypical ME', or is it the CCC?) i.e. mild, moderate and severe ME could potentially be defined. In the case of your daughter, and others who have experienced PEM/PENE as part of the illness in the past, the historic symptoms can be part of the diagnostic criteria that helps to distinguish the illness.

    It's very complex and that's why we need people on the committee who are very familiar with ME and partly why people want them to simply adopt the CCC. We're unlikely to get an outcome that we're all happy with.
     
    Last edited: Jan 7, 2014

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