Kati
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It's because they at the NIH have an institute for complimentary medicine. That means they must put them to work and include them. Never mind they also have an infectious and immunity institute.
The P2P Draft report is out
- Thread starter CBS
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It's because they at the NIH have an institute for complimentary medicine. That means they must put them to work and include them. Never mind they also have an infectious and immunity institute.
Large Donner
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I have a real issue with medicalising situations as in peoples circumstances and then assuming they need life coaching in the form of CBT or GET.
This P2P document has done this without realising the contradiction between suggesting to retire the oxford defintion, whilst at the same time talking up CBT and GET as the two are one and the same in terms of, at a minimal, the research meta data. They also need to address the validity of "co morbid disorders" considering they acknowledge the propensity to misdiagnose and mistreat ME.
People can be fed up with their jobs and hate them but happy in many other aspects of their life. That applies to many people and many other areas of life.
If you have been a mechanic for 20 years and you are unhappy with the job and fed up of it would it make sense to prescribe CBT for all mechanics as a generalised medical treatment for being a mechanic? Or for all doctors because being a doctor can be stressful and cause situational observations in ones life and assume that being a doctor is a co morbid condition with depression or a “stress related disorder”.
The general population can experience depression, even in “officially” significant numbers in relation to people with serious physical illnesses but you don’t say that CBT is a medical treatment for being a member of the general population.
CBT is available via their GP, at least in the UK, for ANYONE who requests it so why put it on a specific treatment list for ME. Its as available to as many people as bananas are so why claim its a “specific treatment” for the condition of ME.
They even the loosen the definition of depression which should by default rule out other illnesses ie ME as the cause of the symptoms being experienced.
In order to qualify for the diagnosis of depression one MUST have reduced activities down considerably and or not “get as much pleasure form said activities as before”.
However, exclusions must be used for the diagnostic label of depression. For example if you used to play football its impossible to get the same amount of satisfaction and enjoyment from playing football if you cant play it anymore, that would even apply to playing cards if you had to sit on a straight back seat upright for a period of time which for a healthy person is not even exerting oneself but for us it is.
What if you used to attend a regular card school with a group of friends but cant do it any longer due to ill health...then what if you got no or little enjoyment from sitting alone playing solitaire? Would that mean you had co morbid depression because you no longer got the same enjoyment from previous activities.
Ticking boxes on a criteria is not sufficient to come up with a diagnostic label...its so evident that the medical profession is using the general adjective term of “being depressed” in a medicalised sense and often claiming it is clinical depression. This then becomes circular logic when the exclusion criteria for a particular label are not taken into account.
It would still be too easy to be diagnosed with co morbid depression with ME even when you don't fit the criteria for depression simply because the questioner doesn't ask if you are unhappy about having ME and not being able to get the fun out of activities that you used too without questioning whether you get fun and happiness from other activities you may have taken up that don't require the same level of physicality. Have you stopped seeing old friends as much because of your situation and made new ones who are in similar circumstances? I know I have.
It is also too easy as the “assessor” who is not experiencing pain, balance problems, extreme exhaustion, PEM and the inability to produce sufficient energy on demand etc from a physical disease to label someone with anxiety depression or even in a co morbid sense. This can happen especially if they answer that they don't go out as much as they used to and have to think out every activity they need to engage in and how they can attempt to achieve it like, food shopping, bathing, socialising or travelling any distance. These are genuine balanced responses we naturally adapt to and have to consider everyday with a chronic disease and are inline with our genuine experiences.
Anxiety, for example, is an adjective is not a diagnosis, anxiety disorder may be a diagnosis that’s the problem. In order for it to qualify from an adjective to a medicalised label it has to be “disproportionate to the actuality of ones situation. I also think many people may get fooled into thinking they qualify for such labels as depression, anxiety etc in a medical sense simply because if someone says the symptoms you are experiencing are such many may just think that is what those conditions feel like if they have never experienced them before. I wonder if many people get caught up in this at first and also if many people accept the “co morbid” labelling when there is is no real logic to them when the assessor does not look for reasons to rule them out and apply even the actual subjective criteria accurately.
My experience is that people with ME sometimes drag themselves to whatever social events they can attend feeling awful and in pain etc if they can just to try to have some kind of normality. I do not recognise the so called higher levels of co morbid affective disorders in relation to the healthy population. One must take into account that after a natural period of adjustment to the illness we cope 100 times better than people in much better positions namely the fit and healthy simply because we are doing it under extreme circumstances. That also doesn’t mean we cope “dysfunctionally” when we first get ill. I am afraid I really do not recognise the so called co morbid psychological issues said to exist in ME when I look at it in comparison to the general population. Infact I will put it like this, - I am fed up of hearing people who are fit and healthy who haven't had their careers destroyed, who don't have to go cap in hand to the state to battle it out for the right to have money to live on etc complaining, moaning and focusing on absolutely ******* nothing. Literally pathetic first world problems. Moaning about service in shops being to slow or sitting in traffic or work issues etc. Yet if we are foolish enough to accept and attend CBT sessions as a “treatment” for ME even the general mention of such issues above would have us labelled as having some kind of “anxiety disorder” let alone simply articulating the real issues we have to endure with a chronic disabling physical disease. So infact I really feel that CBT even in the best circumstances is or cannot be trusted to be used even as coping tool for an ME patient if required by the patient, but a route to dubious “diagnosing” of potentially non existent co morbid medicalised labelling. As long as CBT is on the “treatment list” it will also be a statistical collecting exercise for the said co morbid conditions above and will help to spin and sound bite ME and affective disorders as one and the same or “connected”.
If in some kind of Orwellian existence mental health checks became mandatory especially in the current PR climate of “de stigmatising mental illnesses” and the loose diagnostic criteria I talk of above is used, I really wonder if the whole world would not have some kind of mental health label hung over their heads. I simply am not falling for the current mass movement in the media via, advertising campaigns, newspaper/magazine/journal articles and even soap opera story lines that claims to be “destigmatising mental illness”.
Mass labelling of “mental illnesses” is a form of disempowering people not a form of destigmatising those in genuine need of such services. This is especially worrying at a time where the NHS is about to share all your medical records with anyone they chose to unless you are astute enough to know you have to opt out. All of your data and medical files is not only going to other state departments but also to private companies and even the police!!!! What is more shocking is that a few months ago I heard a radio interview with a proponent of the new scheme which also shares your medical data and files with research organisations without your knowledge unless you area astute enough opt out. The presenter was quite shocked and I suddenly realised the guest proponent who was saying what a wonderful scheme it is was none other than Simon Wessely!!!!!! This was on BBC 3 counties radio and so far I haven’t been able to retrieve the show. I believe its possible to find old shows on BBC radio iplayer.
In research/study questionnaires of the kind of “co morbid depression” rhetoric is extremely troubling as they skew statistics and shape treatment protocols and interpretations of conditions like ME. They also allow the mind body hype to be left on the table partly deliberately as sound bites whilst pretending to see the “co morbid issues” as secondary to the primary disease.
I really question what the validity of saying someone develops co morbid medicalised depression etc after ME if we accept that there is a problem with physicians misdiagnosing ME as depression from the offset. Once a physical life changing disease is present such as ME I would like to propose its just as likely that the “diagnosing of co morbid depression” is just as invalid as the mis diagnosing of ME as depression itself.
The problem with the very notion of GET for ME is that it assumes the default position that the person hasn't found their maximum exertion level and bastardises the word exercise. Any amount of stumbling around and survival exertion can be used to fit a warped definition of the word exercise when it suits them. It has been proved over and over again not to improve any level of physical disability in ME. Exertion is not exercise, exercise is what I used to do when I was healthy on top of carrying out all my daily activities and duties. The word graded implies one can improve upon ones grade like improving ones studying techniques and studying more for an exam instead of slacking. This is insulting. If your ME grade is D you cannot be an A grade ME student or a B or a C by exercising. Therefore you are at the grade you are at. If you are an F you are an F. Exerting at ones maximum physical abilities should have no more mention in ME than it does in the general population and certainly should not in any circumstance be portrayed as a medicalised treatment. You cannot ME grade up by exercising you can only grade down by overexerting or stay the same by exerting yourself within your own envelope. But again exerting at your grade is not exercise it is generalised exertion otherwise known to us as pacing. I am simply fed up of the assumption that we are all doing less than we could therefore we can grade up. Its also the case that as long as GET exists as a “treatment” for ME there is a natural get out clause for people like Wessely to claim they meant it as some kind of pacing when they are exposed.
The general public probably could do more exercise on the whole, we cannot. Its just astonishing that they are aiming GET at the wrong people.
I have ME with co morbid situationalism.
This P2P document has done this without realising the contradiction between suggesting to retire the oxford defintion, whilst at the same time talking up CBT and GET as the two are one and the same in terms of, at a minimal, the research meta data. They also need to address the validity of "co morbid disorders" considering they acknowledge the propensity to misdiagnose and mistreat ME.
People can be fed up with their jobs and hate them but happy in many other aspects of their life. That applies to many people and many other areas of life.
If you have been a mechanic for 20 years and you are unhappy with the job and fed up of it would it make sense to prescribe CBT for all mechanics as a generalised medical treatment for being a mechanic? Or for all doctors because being a doctor can be stressful and cause situational observations in ones life and assume that being a doctor is a co morbid condition with depression or a “stress related disorder”.
The general population can experience depression, even in “officially” significant numbers in relation to people with serious physical illnesses but you don’t say that CBT is a medical treatment for being a member of the general population.
CBT is available via their GP, at least in the UK, for ANYONE who requests it so why put it on a specific treatment list for ME. Its as available to as many people as bananas are so why claim its a “specific treatment” for the condition of ME.
They even the loosen the definition of depression which should by default rule out other illnesses ie ME as the cause of the symptoms being experienced.
In order to qualify for the diagnosis of depression one MUST have reduced activities down considerably and or not “get as much pleasure form said activities as before”.
However, exclusions must be used for the diagnostic label of depression. For example if you used to play football its impossible to get the same amount of satisfaction and enjoyment from playing football if you cant play it anymore, that would even apply to playing cards if you had to sit on a straight back seat upright for a period of time which for a healthy person is not even exerting oneself but for us it is.
What if you used to attend a regular card school with a group of friends but cant do it any longer due to ill health...then what if you got no or little enjoyment from sitting alone playing solitaire? Would that mean you had co morbid depression because you no longer got the same enjoyment from previous activities.
Ticking boxes on a criteria is not sufficient to come up with a diagnostic label...its so evident that the medical profession is using the general adjective term of “being depressed” in a medicalised sense and often claiming it is clinical depression. This then becomes circular logic when the exclusion criteria for a particular label are not taken into account.
It would still be too easy to be diagnosed with co morbid depression with ME even when you don't fit the criteria for depression simply because the questioner doesn't ask if you are unhappy about having ME and not being able to get the fun out of activities that you used too without questioning whether you get fun and happiness from other activities you may have taken up that don't require the same level of physicality. Have you stopped seeing old friends as much because of your situation and made new ones who are in similar circumstances? I know I have.
It is also too easy as the “assessor” who is not experiencing pain, balance problems, extreme exhaustion, PEM and the inability to produce sufficient energy on demand etc from a physical disease to label someone with anxiety depression or even in a co morbid sense. This can happen especially if they answer that they don't go out as much as they used to and have to think out every activity they need to engage in and how they can attempt to achieve it like, food shopping, bathing, socialising or travelling any distance. These are genuine balanced responses we naturally adapt to and have to consider everyday with a chronic disease and are inline with our genuine experiences.
Anxiety, for example, is an adjective is not a diagnosis, anxiety disorder may be a diagnosis that’s the problem. In order for it to qualify from an adjective to a medicalised label it has to be “disproportionate to the actuality of ones situation. I also think many people may get fooled into thinking they qualify for such labels as depression, anxiety etc in a medical sense simply because if someone says the symptoms you are experiencing are such many may just think that is what those conditions feel like if they have never experienced them before. I wonder if many people get caught up in this at first and also if many people accept the “co morbid” labelling when there is is no real logic to them when the assessor does not look for reasons to rule them out and apply even the actual subjective criteria accurately.
My experience is that people with ME sometimes drag themselves to whatever social events they can attend feeling awful and in pain etc if they can just to try to have some kind of normality. I do not recognise the so called higher levels of co morbid affective disorders in relation to the healthy population. One must take into account that after a natural period of adjustment to the illness we cope 100 times better than people in much better positions namely the fit and healthy simply because we are doing it under extreme circumstances. That also doesn’t mean we cope “dysfunctionally” when we first get ill. I am afraid I really do not recognise the so called co morbid psychological issues said to exist in ME when I look at it in comparison to the general population. Infact I will put it like this, - I am fed up of hearing people who are fit and healthy who haven't had their careers destroyed, who don't have to go cap in hand to the state to battle it out for the right to have money to live on etc complaining, moaning and focusing on absolutely ******* nothing. Literally pathetic first world problems. Moaning about service in shops being to slow or sitting in traffic or work issues etc. Yet if we are foolish enough to accept and attend CBT sessions as a “treatment” for ME even the general mention of such issues above would have us labelled as having some kind of “anxiety disorder” let alone simply articulating the real issues we have to endure with a chronic disabling physical disease. So infact I really feel that CBT even in the best circumstances is or cannot be trusted to be used even as coping tool for an ME patient if required by the patient, but a route to dubious “diagnosing” of potentially non existent co morbid medicalised labelling. As long as CBT is on the “treatment list” it will also be a statistical collecting exercise for the said co morbid conditions above and will help to spin and sound bite ME and affective disorders as one and the same or “connected”.
If in some kind of Orwellian existence mental health checks became mandatory especially in the current PR climate of “de stigmatising mental illnesses” and the loose diagnostic criteria I talk of above is used, I really wonder if the whole world would not have some kind of mental health label hung over their heads. I simply am not falling for the current mass movement in the media via, advertising campaigns, newspaper/magazine/journal articles and even soap opera story lines that claims to be “destigmatising mental illness”.
Mass labelling of “mental illnesses” is a form of disempowering people not a form of destigmatising those in genuine need of such services. This is especially worrying at a time where the NHS is about to share all your medical records with anyone they chose to unless you are astute enough to know you have to opt out. All of your data and medical files is not only going to other state departments but also to private companies and even the police!!!! What is more shocking is that a few months ago I heard a radio interview with a proponent of the new scheme which also shares your medical data and files with research organisations without your knowledge unless you area astute enough opt out. The presenter was quite shocked and I suddenly realised the guest proponent who was saying what a wonderful scheme it is was none other than Simon Wessely!!!!!! This was on BBC 3 counties radio and so far I haven’t been able to retrieve the show. I believe its possible to find old shows on BBC radio iplayer.
In research/study questionnaires of the kind of “co morbid depression” rhetoric is extremely troubling as they skew statistics and shape treatment protocols and interpretations of conditions like ME. They also allow the mind body hype to be left on the table partly deliberately as sound bites whilst pretending to see the “co morbid issues” as secondary to the primary disease.
I really question what the validity of saying someone develops co morbid medicalised depression etc after ME if we accept that there is a problem with physicians misdiagnosing ME as depression from the offset. Once a physical life changing disease is present such as ME I would like to propose its just as likely that the “diagnosing of co morbid depression” is just as invalid as the mis diagnosing of ME as depression itself.
The problem with the very notion of GET for ME is that it assumes the default position that the person hasn't found their maximum exertion level and bastardises the word exercise. Any amount of stumbling around and survival exertion can be used to fit a warped definition of the word exercise when it suits them. It has been proved over and over again not to improve any level of physical disability in ME. Exertion is not exercise, exercise is what I used to do when I was healthy on top of carrying out all my daily activities and duties. The word graded implies one can improve upon ones grade like improving ones studying techniques and studying more for an exam instead of slacking. This is insulting. If your ME grade is D you cannot be an A grade ME student or a B or a C by exercising. Therefore you are at the grade you are at. If you are an F you are an F. Exerting at ones maximum physical abilities should have no more mention in ME than it does in the general population and certainly should not in any circumstance be portrayed as a medicalised treatment. You cannot ME grade up by exercising you can only grade down by overexerting or stay the same by exerting yourself within your own envelope. But again exerting at your grade is not exercise it is generalised exertion otherwise known to us as pacing. I am simply fed up of the assumption that we are all doing less than we could therefore we can grade up. Its also the case that as long as GET exists as a “treatment” for ME there is a natural get out clause for people like Wessely to claim they meant it as some kind of pacing when they are exposed.
The general public probably could do more exercise on the whole, we cannot. Its just astonishing that they are aiming GET at the wrong people.
I have ME with co morbid situationalism.
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snowathlete
Senior Member
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No idea. I've not read the evidence review so not able to comment. I only followed the meetings via tweets too, so I dont know how much that might have influenced them.
Absence of Immune abnormalities in that list strikes me as espectially odd. I see it as a pretty massive part of the disease.
You make some good points, here and in other posts.
However I think there may be a difference in purpose, between what you seem to be thinking of and what I understand the point of making a better criteria to be.
When a patient goes to see Dr. Julia Newton, or Dr. Andy Kogelnik or Dr. Jose Montoya or Dr. Peter Rowe and so on, such docs have a pretty good idea what an ME-like patient is. And they are able to listen carefully and look for other diseases, and then diagnose ME if appropriate. In such a case, I'm not sure that it would much whether they were using Fukuda or CCC or ICC something new.
The problem is that most patients would not get to see a doctor of this level of knowledge unless they already suspected this was the problem (even then, many do not have access).
At the moment, criteria for unknowledgeable doctors says: "suspect CFS in a patient with fatigue [tiredness] lasting >6 months" with or without mostly vague add-on symptoms (depending on country/ criteria). Even the way PEM is described by NICE, for example, comes out vague.
This is why Dr. Newton, for example, is finding so many patients who come to her have other diseases which have missed being diagnosed, and these people have been being told they have CFS, there is nothing that can be done, when in fact for many of them there was something that could have been done.
It is this "tired for >6 months", do nothing [or do ineffective or harmful things, or provide only moral support (for good or ill as the case may be) and no symptoms support], patronize/disbelieve... that is what I think a new criteria is meant to fix (be it CCC or anything else).
In a research criteria, of course, it is fixing studies on such patients with an odd collection of otherwise-diagnosable diseases (which might be primary conditions in some cases), as there are some researchers, even ones who have been working on this for some time, who know no more than the random unknowledgeable doctor. We hear from them at conferences and workshops from time to time...
jimells
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Are you suggesting that incompetent analysis has allowed studies to be included in the evidence review that otherwise would have been excluded?
heapsreal
iherb 10% discount code OPA989,
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We have biomarkers that can help diagnose ME that could be used along with the CCC, they just have to decide to use them. I think it makes the diagnosis alot more accurate for research purposes.
This thread is quite long, so I don't know if the following question has been answered or not.
Why is the P2P draft document released by the Office of Disease Prevention an "Draft Executive Summary" Report and not a "Draft" Report?
I have not been able to find any information where the HHS, NIH or the ODP said that the draft document that would be released for public review and comment would be an "executive summary" of the P2P Workshop Panel's report.
Immediately following the workshop, the panel convenes in executive session for 1 day and develops a draft report. The draft report is posted on the ODP website, and public comments are accepted for 4 weeks. The final report is then released approximately 2 weeks later. The panel may edit its statement for clarity, correct any factual errors that might be discovered, and revise the draft report according to public comments. After the panel report is finalized, the report is released and panelists hold a press telebriefing to address media questions.
https://prevention.nih.gov/programs-events/pathways-to-prevention/frequently-asked-questions
I have always understood an "executive summary" of a report to be a summary of a much longer report. In looking up the definition of an "executive summary" when used in conjunction with the word "report", here are some of the definitions that I found.
Unless someone is aware of different terminology for an "executive summary" of a report that is specifically used by the HHS, NIH, ODP or P2P Workshop Panels, it appears that a "draft report" from the P2P Workshop Panel has not been released for public review and comment.
I believe the following questions need to be asked and answered by the ODP/NIH/HHS in order for the public to understand what draft document has been released for review and comment.
1) Is there a "P2P Draft Report" and a "P2P Executive Summary Draft Report"?
a) If yes, why was the "Draft Executive Summary Report" and not a "Draft Report" posted on 12/18/2014 by the ODP, when it has been represented to the public that a "Draft Report" would be made available for review and comment?
b) If no, is a draft report still being developed by the P2P Workshop Panel and will this document be made available for public review and comment?
Edit: See Reply #214 below for an e-mail that has been sent to the Office of Disease Prevention to ask the questions outlined above.
Why is the P2P draft document released by the Office of Disease Prevention an "Draft Executive Summary" Report and not a "Draft" Report?
I have not been able to find any information where the HHS, NIH or the ODP said that the draft document that would be released for public review and comment would be an "executive summary" of the P2P Workshop Panel's report.
Immediately following the workshop, the panel convenes in executive session for 1 day and develops a draft report. The draft report is posted on the ODP website, and public comments are accepted for 4 weeks. The final report is then released approximately 2 weeks later. The panel may edit its statement for clarity, correct any factual errors that might be discovered, and revise the draft report according to public comments. After the panel report is finalized, the report is released and panelists hold a press telebriefing to address media questions.
https://prevention.nih.gov/programs-events/pathways-to-prevention/frequently-asked-questions
I have always understood an "executive summary" of a report to be a summary of a much longer report. In looking up the definition of an "executive summary" when used in conjunction with the word "report", here are some of the definitions that I found.
http://en.wikipedia.org/wiki/Executive_summary
http://dictionary.reference.com/browse/executive summary
http://www.businessdictionary.com/definition/executive-summary.html
http://thelawdictionary.org/executive-summary/
Unless someone is aware of different terminology for an "executive summary" of a report that is specifically used by the HHS, NIH, ODP or P2P Workshop Panels, it appears that a "draft report" from the P2P Workshop Panel has not been released for public review and comment.
I believe the following questions need to be asked and answered by the ODP/NIH/HHS in order for the public to understand what draft document has been released for review and comment.
1) Is there a "P2P Draft Report" and a "P2P Executive Summary Draft Report"?
a) If yes, why was the "Draft Executive Summary Report" and not a "Draft Report" posted on 12/18/2014 by the ODP, when it has been represented to the public that a "Draft Report" would be made available for review and comment?
b) If no, is a draft report still being developed by the P2P Workshop Panel and will this document be made available for public review and comment?
Edit: See Reply #214 below for an e-mail that has been sent to the Office of Disease Prevention to ask the questions outlined above.
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usedtobeperkytina
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While I do believe "activity or stressor-induced neuroimmune symptoms" is key to our disease, I believe it is hard to objectively measure. The 2-day CPET can do so, but there are limitations to using it in research or clinical diagnosis:
Needs people trained to give it and read the report (so says Snell and his group)
Severely ill can't do the test.
Very costly. (Barrier to widespread clinical or research use.)
Some who have comorbid conditions can't do the test. (heart, etc. and it is possible to have our disease and another fatiguing disease or one that would make the CPET test unsafe.)
It can cause a long relapse in some and thus some of even our ME/CFS experts have questioned perusing it in light of their oath to do no harm.
I believe these are some of the reasons the CDC is "trying" to use other post-exercise tests (blood chemistry and neurocognitive). Hopefully they will be successful. I don't know if the Lights' gene expression post-exercise test is included in CDC study.
I do believe some key questions from a doctor can identify if the patient is experiencing this symptom.
usedtobeperkytina
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Someone else asked if my statement that CCC is not best that can be done on today's evidence means I disagree with the 50 experts.
First, one of them, at least, has already changed her mind. In fact, she admitted she mostly signed because she felt this was "her people" and she wanted to support her people. But when she read the goals of IOM contract and how it was going to be done, she said this is exactly what's needed, and the science is strong enough that it's time.
Second, some of the ones who signed are also authors on the ME-ICC, which the authors said should be used.
Thirdly, some who signed, which said IOM contract should be cancelled, are now sitting on the IOM committee to either endorse the CCC, ME-ICC, another one or create a new one. Did they change their mind?
Fourthly, not all ME/CFS experts signed.
I will be glad with any progress from Fukuda or Oxford. And CCC would be progress. However, since some of the ME/CFS experts authored the ME-ICC, that one might actually be better. Just picking one and then advocating for it, whether you are patients or scientists, is not scientific. It hasn't been validated through a trial on actual patients, especially to see how well it distinguishes from patients with other diseases. In this day and time (as opposed to when Fukuda was created), something more than doctors writing "this is our opinion" is needed to get the endorsement of medical societies and be credible, even if it is backed by decades of clinical experience.
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usedtobeperkytina
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And this brings up a question: If this report said to retire Fukuda like it says to retire Oxford, then someone could claim all studies using Fukuda are unreliable and should be thrown out, just like is being said about Oxford studies.
Personally, I think it's a good point that Oxford studies should be thrown out. And I think saying Oxford should be retired is inconsistent with giving any Oxford studies any validity in the review now. (OK in AHRQ review because they had to include them to make the determination that it isn't good.)
But, since CCC has only started to be used in research in the last few years, and not widely so, please don't throw out all the Fukuda studies. Although not precise enough based on what we know now, what we know now is based on studies that used Fukuda.
joshualevy
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My view of the draft P2P document, is that it reminds me of those Vatican documents from years ago. It is about something important, it is vague, and it contains a lot of little bits that make different constituencies happy. Everyone can go through it, and find a sentence or two to support their position.
However, none of that is important. What is important is how it is actually used by the powers that be. I think discussion what this sentence means or the relative importance of the different parts is a complete waste of time, because the words do not matter. What they are used for is what matters, and we can only know that after a few months (maybe a few years) of actual use. Although, in this one case, seeing how the IOM committee uses this document might be enough to see overall what it means.
However, none of that is important. What is important is how it is actually used by the powers that be. I think discussion what this sentence means or the relative importance of the different parts is a complete waste of time, because the words do not matter. What they are used for is what matters, and we can only know that after a few months (maybe a few years) of actual use. Although, in this one case, seeing how the IOM committee uses this document might be enough to see overall what it means.
Yeah, this is true. But my point is that it's a bit of a chicken and an egg problem. The NIH appear to have convened a workshop looking at the body of research for ME/CFS. There are many complaints that the body of research is small and not of high quality. But, the comittee can only find what is there and make recommendations on it.
For a very long time ME/CFS experts have been saying the federal health agencies don't take initiative and don't do/fund studies (or they use the wrong patient population or test the wrong things). But instead of waiting for the NIH/CDC to do studies, maybe the ME/CFS clinicians should assert their expertise and publish the info they already have based on their many cumulative years of clinical experience. Perhaps they could take unilateral action to define the illness and make recommendations on how to test for and monitor it. Set the standard of practice in a more coordinated and structured way. Fill the vacuum - if you will.
Then next time the NIH has a workshop there will be more of a body of clinical research/experience to draw on from the people who are the real experts and less CBT/GET etc to consider.
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alex3619
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- Logan, Queensland, Australia
This is what health agencies the world over are moving to STOP. Its not "evidence based", which is actually a misinterpretation of what "evidence based" really means.
If all you have is case series studies, for example, that is the best evidence available. If the effect size is large, then its equivalent to the best evidence available from an RCT. The point of wanting an dbRpCT is that you want to eliminate as many sources of bias as possible. A very large effect size is very indicative even without that.
If your RCT is not blinded, has a small effect size, has inappropriate controls and methodology and analysis, and relies primarily on subjective outcomes, then its not the highest standard of evidence ... I am referring to PACE again, of course.
Rubber stamp application of EBM is dangerous. The principles of EBM have to be applied in detail, and broad sweeping reviews and slam dunk meta-analyses just don't cut it. You cannot ignore a detailed analysis of the individual studies. One of the things I am concerned about is that in a hurry to get large reviews done with few staff, tight deadlines, and limited budgets, cookie-cutter analyses are being done. EBM takes a huge amount of time, effort and resources. It should never be rushed, and never be done on a tight budget with limited resources. Either do it right, or don't do it.
So, to be clear, under EBM rules Lerner's antiviral studies on a targeted subgroup have much better results, are a higher standard of evidence than PACE.
When its done to tight budgets and in a hurry, its not EBmedicine, its either EBmanagement, and has an economic and political focus, or its inept.
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I have sent an e-mail to the Director of the Office of Disease Prevention ("ODP"), Dr. David Murray, to ask the questions raised above, as well as several additional questions/comments related to the P2P Report Process.
Here is my e-mail (redacted to take out my contact information), as well as an earlier e-mail and response from Dr. Murray, which I posted here - http://forums.phoenixrising.me/index.php?threads/when-does-the-p2p-report-come-out.34217/ (Reply #14).
When I receive a response to my e-mail I will post it here in this thread. If anyone else would like to raise questions/comments to Dr. Murray, his contact information is noted in these e-mails.
taniaaust1
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Im finding it interesting what some like with this.. I myself dont like at all..
I dont like the above statement, I think it has too much empasis on psych stuff then there should be in our illness. eg if this report was say for cancer, I dont think they would make a big thing about it being "critical" to "explore" depression, anxiety and fear.
that annoys me and I dont even see it as a positive thing as its only just the same kind of stuff CDC anyway sprouts so its not progressive at all. I hate how they dont have anything like allegists, immunologists, gastoentologists, gynocologists etc etc mentioned in this (many of us see these specialists for ME issues). rather they push the mental health side of things so we see.case managers, social workers, psychologists mentioned.
I dont like the above statement, I think it has too much empasis on psych stuff then there should be in our illness. eg if this report was say for cancer, I dont think they would make a big thing about it being "critical" to "explore" depression, anxiety and fear.
that annoys me and I dont even see it as a positive thing as its only just the same kind of stuff CDC anyway sprouts so its not progressive at all. I hate how they dont have anything like allegists, immunologists, gastoentologists, gynocologists etc etc mentioned in this (many of us see these specialists for ME issues). rather they push the mental health side of things so we see.case managers, social workers, psychologists mentioned.
I think people are so used to seeing so shockening bad around this illness that they overlook things like this, as this report was better then most of us expected.
taniaaust1
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I too see it as a carefully crafted political document which can be taken many different ways.
No. What I am saying is that even if we concede to them and assume that those studies are valid (and this is a debatable point as we all know) and even if we take the reviewers' inclusion/exclusion criteria at face value, when you look at their analysis it's not done correctly.
Regarding case definitions, I agree that for a well-established credible disease like RA those are irrelevant. But for a disease like ME/CFS where many doctors don't even believe it's a disease and where there are no physical signs that the majority of patients have and there are no consistent laboratory abnormalities in the majority of patients it is absolutely critical that the case definition be tight. Oxford case definition with its extremely high sensitivity and low specificity isn't some ivory tower joke we can all ignore or point and laugh at; it has extremely severe real-world consequences for patients like denial of disability benefits, exercise-induced harm, social ostracism/abuse etc. because psychiatry can point to "evidence" that exercise improves "fatigue" in their studies stuffed full of patients who say they are fatigued but may not have any of the cardinal ME symptoms like post-exertional worsening of symptoms and dysautonomia. We have no way of objectively knowing whether someone who is tired has CFS. Most people who say they have fatigue do not have CFS, let alone ME, just as not everyone who says they have joint pain has RA.
taniaaust1
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umm so are they trying to say that any symptoms at all outside of the ones used in definition are comorbid? and not a normal part of ME/CFS.
That's like saying swelling with a broken leg is a comorbid condition. ME/CFS has never been the few symptoms they decide to list in a definition.
taniaaust1
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If this report was coming from the UK, I would see it astounding then seeing its coming from America where things arent as bad as in the UK with this I dont see that so.
That statemet that GET often causes additional suffering. Is vague and could mean anything. It could also be taken to mean something like it causes mental anguish ie suffereing as ME/CFS people "believe" its causing harm (it isnt a statement which necessarily is saying that we ARE physically harmed by GET and nor is it clear what kind of suffering being talked about).
Vagueness is how we've often been tricked and at times twisted into thinking that something being done is going to change things.
Bob
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Just to clarify, Tania, I like the specific bits of text that I highlighted. e.g. "ME/CFS is not a psychiatric disease" and "We believe that ME/CFS is a distinct disease". I posted the full paragraphs just for context.
Re the psych stuff that you mention, yes, I agree that this is currently a major problem for us, for a range of reasons. We all know how studies looking at depression, fear and anxiety are twisted to misrepresent the illness, etc. And I agree with your other points.
But, if quality of life research was to be done honestly, within the context of the rest of the P2P document (i.e. in the context of improving the quality of life of patients with a complex biomedical disease), then it wouldn't be quite such a problem for us. But, yes, any such research into "depression, "anxiety" and "fear" would probably be a complete waste of resources, in my opinion, and would still probably be twisted in some way against us.
Like you say, the bit about using multidisciplinary care teams is good until you read the rest of the recommendation. I found that really underwhelming as well.
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