Hi Bob RE your list of suggestions, here is my views
1. Promotion of CBT and GET as therapies for CFS patients should be removed from CDC literature, toolkit and website.
No, the entire CDC information on its site should be removed because it is all scientifically and medically faulty, and only promotes the Psychiatric disease CFS, which has nothing whatsoever to do with physically ill patients!!! All ME research should be moved to a different government body, because the CDC has spent the last 25 years proving that they are incapable of doing it! And recent statements from the CDC that their plans for the future is to compare the Fukuda definition, which the majority of the writers were psychiatrists and defines CFS in such a way that it can only scientifically be seen as a psychiatric, with the Wichita study in which they did such minimal testing to rule out other diseases that it can only of been done on mixed cohorts. Shows that the CDC doesn’t have a clue what it is doing or is deliberately doing it badly and should not be allowed to do any future research.
2. The IACFS/ME toolkit should be promoted and adopted by the CDC.
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
No the testing and list of diseases to rule out is not complete and should not be used until it has been fixed, the term CFS/ME should not be allowed because it associates the psychiatric disease CFS with the physical disease ME, it’s like saying someone has schizophrenia/ cancer which is medically nonsensical, because what it says about what the symptoms are, is based on a list of tests that will NOT rule out all other diseases, it is more than likely faulty. So we shouldn’t be encouraging doctors and patients to see what the IACFS says as scientific facts, we should be aiming to get scientific replicated studies done on patients that have had ever other disease ruled out, as I have just outlined to Floydguy, we can then put out scientifically correct information on what ME really is instead of running the risk that what the IACFSME says in wrong and cause more confusion.
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.
No waste of time, the CCC and ICC wont be accepted because they are based on Clinical experience, not replicated scientific facts, the ICC writers have not as of yet said what testing they recommend, but the CCC recommends testing that is faulty so it will be based on mixed cohorts, as the IACFS/ME is. We need replicated studies of a pure cohorts done and a new definition written on scientific facts not clinical experience so that no one can argue against it ever
.
5. More research funding for the biomedical model of illness, using CCC and ICC for all research.
More research funding yes, CCC and ICC no, first do replication studies on pure cohorts so we know exactly what is being studied first, then fund research into it.
6. Research trials be carried out into Rituximab, and related pharmaceuticals, using CCC and ICC cohorts.
No, the Norwegian researchers are not relying on definitions, but from what I’ve read they are absolutely fastidious about ruling out all other diseases because they know if they don’t they will kill people, if either CCC or ICC are used without ruling out all other diseases people will die.
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
Create a comprehensive list of differential diagnose and the tests needed and make it compulsory for all, 100% YES this is the most important thing that is needed and nothing else will work until this is done. But IACFS/ME and HFME are far from complete and a complete list will have to be written. Due to the CDC proven track record of total incompetence on this issue, I don’t think that they should be the ones responsible for it!
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.
Once replication studies are done to prove scientifically what ME is, then specialist centers may be needed, but the most likely outcome is that we would end up with doctors in hospitals who specialize in it, and patients can be referred to them, of course there would be no psych crap, because the process of ruling out all other diseases would also rule out all psyc diseases.
9. The CDC should stop using the 'empirical' definition for research.
No the CDC should stop using all its definitions for research, because they are all unscientific and not based on replicated studies! i.e. they are crap and say that CFS is a psychiatric illness. the CDC with its terrible track record should not be researching this conditon!
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.
Same answer as for number 2, the CDC should take down its CFS website, and all research should be moved to another government body.
11. Give CFSAC power to educate physicians, schools, social services, and the public itself, and the funding to issue press releases.
No, until replication studies have been done on pure cohorts it is impossible to put out accurate information. We have to do things in a proper scientific manner replicated studies first.
12. Invest research funds into finding a biomarker or biomarkers for ME.
Yes do scientific replicated studies as outlined on pure cohorts.
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.
The CDC has no intention of admitting that they have done nothing about ME for the last 25 years, Dr Unger has already outlined their plan and it is a farce!!! The CDC should not be allowed anywhere near this disease and all research should be moved to another government body.
17. The CFSAC should review all their past recommendations and to re-recommend them where agreed.
All the CFSAC needs to do is recommend that a complete differential diagnosis list is created with all the tests to rule out all other diseases, and that replicated studies are done on pure cohorts to find scientific facts about this disease that can be used to create a new definition, and hopefully diagnostic tests, cures and treatments. Oh and it needs to change its name CFS is a psychiatric illness!
Sorry bob looks like we only agree on a couple of things, but we do agree on the two essential points which are the only ones that matter!
Create a comprehensive list of differential diagnoses and the tests needed and make it compulsory for all, but this has to be 100% complete not like the IACFS/ME one or HFME, and I don’t think the CDC should be allowed anywhere near it,
Invest research funds into finding a biomarker or biomarkers for ME. Yes starting with replicated studies on pure cohorts to find out what ME is for certain so we have scientific proof of this, so we can tell the psyc lobby to stick it where the sun don’t shine! And can get on with proper research.
Just doing these two things will solve the entire problem. All the misdiagnosed will be found and treated and we will have pure cohorts, then properly funded research on the pure cohorts should unravel the mystery of ME very quickly. And we can all get cured and get on with our lives.
All the best
1. Promotion of CBT and GET as therapies for CFS patients should be removed from CDC literature, toolkit and website.
No, the entire CDC information on its site should be removed because it is all scientifically and medically faulty, and only promotes the Psychiatric disease CFS, which has nothing whatsoever to do with physically ill patients!!! All ME research should be moved to a different government body, because the CDC has spent the last 25 years proving that they are incapable of doing it! And recent statements from the CDC that their plans for the future is to compare the Fukuda definition, which the majority of the writers were psychiatrists and defines CFS in such a way that it can only scientifically be seen as a psychiatric, with the Wichita study in which they did such minimal testing to rule out other diseases that it can only of been done on mixed cohorts. Shows that the CDC doesn’t have a clue what it is doing or is deliberately doing it badly and should not be allowed to do any future research.
2. The IACFS/ME toolkit should be promoted and adopted by the CDC.
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
No the testing and list of diseases to rule out is not complete and should not be used until it has been fixed, the term CFS/ME should not be allowed because it associates the psychiatric disease CFS with the physical disease ME, it’s like saying someone has schizophrenia/ cancer which is medically nonsensical, because what it says about what the symptoms are, is based on a list of tests that will NOT rule out all other diseases, it is more than likely faulty. So we shouldn’t be encouraging doctors and patients to see what the IACFS says as scientific facts, we should be aiming to get scientific replicated studies done on patients that have had ever other disease ruled out, as I have just outlined to Floydguy, we can then put out scientifically correct information on what ME really is instead of running the risk that what the IACFSME says in wrong and cause more confusion.
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.
No waste of time, the CCC and ICC wont be accepted because they are based on Clinical experience, not replicated scientific facts, the ICC writers have not as of yet said what testing they recommend, but the CCC recommends testing that is faulty so it will be based on mixed cohorts, as the IACFS/ME is. We need replicated studies of a pure cohorts done and a new definition written on scientific facts not clinical experience so that no one can argue against it ever
.
5. More research funding for the biomedical model of illness, using CCC and ICC for all research.
More research funding yes, CCC and ICC no, first do replication studies on pure cohorts so we know exactly what is being studied first, then fund research into it.
6. Research trials be carried out into Rituximab, and related pharmaceuticals, using CCC and ICC cohorts.
No, the Norwegian researchers are not relying on definitions, but from what I’ve read they are absolutely fastidious about ruling out all other diseases because they know if they don’t they will kill people, if either CCC or ICC are used without ruling out all other diseases people will die.
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
Create a comprehensive list of differential diagnose and the tests needed and make it compulsory for all, 100% YES this is the most important thing that is needed and nothing else will work until this is done. But IACFS/ME and HFME are far from complete and a complete list will have to be written. Due to the CDC proven track record of total incompetence on this issue, I don’t think that they should be the ones responsible for it!
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.
Once replication studies are done to prove scientifically what ME is, then specialist centers may be needed, but the most likely outcome is that we would end up with doctors in hospitals who specialize in it, and patients can be referred to them, of course there would be no psych crap, because the process of ruling out all other diseases would also rule out all psyc diseases.
9. The CDC should stop using the 'empirical' definition for research.
No the CDC should stop using all its definitions for research, because they are all unscientific and not based on replicated studies! i.e. they are crap and say that CFS is a psychiatric illness. the CDC with its terrible track record should not be researching this conditon!
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.
Same answer as for number 2, the CDC should take down its CFS website, and all research should be moved to another government body.
11. Give CFSAC power to educate physicians, schools, social services, and the public itself, and the funding to issue press releases.
No, until replication studies have been done on pure cohorts it is impossible to put out accurate information. We have to do things in a proper scientific manner replicated studies first.
12. Invest research funds into finding a biomarker or biomarkers for ME.
Yes do scientific replicated studies as outlined on pure cohorts.
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.
The CDC has no intention of admitting that they have done nothing about ME for the last 25 years, Dr Unger has already outlined their plan and it is a farce!!! The CDC should not be allowed anywhere near this disease and all research should be moved to another government body.
17. The CFSAC should review all their past recommendations and to re-recommend them where agreed.
All the CFSAC needs to do is recommend that a complete differential diagnosis list is created with all the tests to rule out all other diseases, and that replicated studies are done on pure cohorts to find scientific facts about this disease that can be used to create a new definition, and hopefully diagnostic tests, cures and treatments. Oh and it needs to change its name CFS is a psychiatric illness!
Sorry bob looks like we only agree on a couple of things, but we do agree on the two essential points which are the only ones that matter!
Create a comprehensive list of differential diagnoses and the tests needed and make it compulsory for all, but this has to be 100% complete not like the IACFS/ME one or HFME, and I don’t think the CDC should be allowed anywhere near it,
Invest research funds into finding a biomarker or biomarkers for ME. Yes starting with replicated studies on pure cohorts to find out what ME is for certain so we have scientific proof of this, so we can tell the psyc lobby to stick it where the sun don’t shine! And can get on with proper research.
Just doing these two things will solve the entire problem. All the misdiagnosed will be found and treated and we will have pure cohorts, then properly funded research on the pure cohorts should unravel the mystery of ME very quickly. And we can all get cured and get on with our lives.
All the best