Comments for ICMCC http://www.icmcc.org Just another WordPress weblog Mon, 01 Mar 2010 10:27:01 -0700 http://wordpress.org/?v=2.8.6 hourly 1 Comment on Enhancing quality of life through telerehabilitation by Alan Waterman http://science.icmcc.org/2010/02/26/enhancing-quality-of-life-through-telerehabilitation/comment-page-1/#comment-118466 Alan Waterman Mon, 01 Mar 2010 10:27:01 +0000 http://articles.icmcc.org/?p=13762#comment-118466 In order to enhance functional recovery it is fundamental that a customized home based rehabilitation program ensures that traditional task and exercise based rehabilitation is undertaken intensively and regularly. The MediTouch HandTutor is a rehabilitation glove and software which offers impairment oriented training (IOT) and augmented feedback. The HandTutor provides repetitive customized isolated or inter joint co-ordinated finger and wrist hand exercises and rehabilitates fine movements of the hand and wrist. At the same time the dedicated rehabilitation software motivates the patient to continue intensive repetitive exercises by providing challenging games that have been designed around both neurological and Orthopedic conditions. Research with the HandTutor confirms that task oriented training should be combined with Impairment oriented (IOT) training to achieve enhanced functional recovery. The HandTutor is used in hospitals and community hand therapy clinics and home care to give an intensive active isolated exercise program. In home care the HandTutor can be supported by out patient therapy sessions or PT/ OT home visits or by tele rehabilitation therapy. In order to enhance functional recovery it is fundamental that a customized home based rehabilitation program ensures that traditional task and exercise based rehabilitation is undertaken intensively and regularly.

The MediTouch HandTutor is a rehabilitation glove and software which offers impairment oriented training (IOT) and augmented feedback. The HandTutor provides repetitive customized isolated or inter joint co-ordinated finger and wrist hand exercises and rehabilitates fine movements of the hand and wrist. At the same time the dedicated rehabilitation software motivates the patient to continue intensive repetitive exercises by providing challenging games that have been designed around both neurological and Orthopedic conditions.

Research with the HandTutor confirms that task oriented training should be combined with Impairment oriented (IOT) training to achieve enhanced functional recovery. The HandTutor is used in hospitals and community hand therapy clinics and home care to give an intensive active isolated exercise program. In home care the HandTutor can be supported by out patient therapy sessions or PT/ OT home visits or by tele rehabilitation therapy.

]]> Comment on Wii board helps physios strike a balance after strokes by physiotherapists kent http://articles.icmcc.org/2010/01/17/wii-board-helps-physios-strike-a-balance-after-strokes/comment-page-1/#comment-115722 physiotherapists kent Wed, 17 Feb 2010 10:49:15 +0000 http://articles.icmcc.org/?p=13071#comment-115722 Thanks for point this out, we have a WII and its one of the best consoles out Thanks for point this out, we have a WII and its one of the best consoles out

]]> Comment on Elektronische Gesundheitskarte startet Ende 2010 in Nordhessen by Joaquin http://articles.icmcc.org/2010/02/08/elektronische-gesundheitskarte-startet-ende-2010-in-nordhessen/comment-page-1/#comment-114762 Joaquin Sat, 13 Feb 2010 00:56:32 +0000 http://articles.icmcc.org/2010/02/08/elektronische-gesundheitskarte-startet-ende-2010-in-nordhessen/#comment-114762 Der Start der Gesundheitskarte wurde so oft aufgrund von Mängeln verschoben und wird nun als ein kastriertes Etwas ihrer ursrpünglichen Idee, nach viel zu vielen Kosten auf die Bürger los gelassen. Der pure Irrsinn. Der Start der Gesundheitskarte wurde so oft aufgrund von Mängeln verschoben und wird nun als ein kastriertes Etwas ihrer ursrpünglichen Idee, nach viel zu vielen Kosten auf die Bürger los gelassen. Der pure Irrsinn.

]]> Comment on One in Five Physicians Likely To Purchase an iPad, More than 60 Percent Intrigued By New Device According to Epocrates Survey by Lodewijk http://articles.icmcc.org/2010/02/08/one-in-five-physicians-likely-to-purchase-an-ipad-more-than-60-percent-intrigued-by-new-device-according-to-epocrates-survey/comment-page-1/#comment-114090 Lodewijk Tue, 09 Feb 2010 08:15:19 +0000 http://articles.icmcc.org/2010/02/08/one-in-five-physicians-likely-to-purchase-an-ipad-more-than-60-percent-intrigued-by-new-device-according-to-epocrates-survey/#comment-114090 Thank you Lucien for the link. Especially the discussion is very interesting. I much appreciated the remark that the talk is about what people hope the iPad will do. BTW the same is true about your remark on timing: "It's all about timing. EHR, web 2.0, Participatory Healthcare, demographics of patients-population, and it's sexy". That is also a dream, a dream of how healtcare might change. The problem with us, who think of and work at these technological aspects and innovations be it EHR or mhealth is that we sometimes forget that the majority of caregivers and the very large majority of patients don't even know what we are talking about. As long as simple wearable heart monitoring devices do not get massively used, I don't think a tablet PC with limited functionality will change healthcare. I even doubt if it will change the way professionals work. It is the old problem, what should be first, the tools or the knowledge? IMO, awareness and knowledge will have to lead the way, the implementation and use of tools will than follow. Does this mean that these kinds of new technical developments are lacking necessity? On the contrary, they will help modify the perception and awareness of people. But their impact will be indirect. Thank you Lucien for the link. Especially the discussion is very interesting. I much appreciated the remark that the talk is about what people hope the iPad will do. BTW the same is true about your remark on timing: “It’s all about timing. EHR, web 2.0, Participatory Healthcare, demographics of patients-population, and it’s sexy”. That is also a dream, a dream of how healtcare might change. The problem with us, who think of and work at these technological aspects and innovations be it EHR or mhealth is that we sometimes forget that the majority of caregivers and the very large majority of patients don’t even know what we are talking about.
As long as simple wearable heart monitoring devices do not get massively used, I don’t think a tablet PC with limited functionality will change healthcare. I even doubt if it will change the way professionals work. It is the old problem, what should be first, the tools or the knowledge? IMO, awareness and knowledge will have to lead the way, the implementation and use of tools will than follow. Does this mean that these kinds of new technical developments are lacking necessity? On the contrary, they will help modify the perception and awareness of people. But their impact will be indirect.

]]> Comment on One in Five Physicians Likely To Purchase an iPad, More than 60 Percent Intrigued By New Device According to Epocrates Survey by Lucien Engelen http://articles.icmcc.org/2010/02/08/one-in-five-physicians-likely-to-purchase-an-ipad-more-than-60-percent-intrigued-by-new-device-according-to-epocrates-survey/comment-page-1/#comment-113999 Lucien Engelen Mon, 08 Feb 2010 22:49:21 +0000 http://articles.icmcc.org/2010/02/08/one-in-five-physicians-likely-to-purchase-an-ipad-more-than-60-percent-intrigued-by-new-device-according-to-epocrates-survey/#comment-113999 Lodewijk, for some little mashup on information on the iPad for healthcare : http://lucienengelen.posterous.com/will-apples-ipad-change-healthcare Lodewijk, for some little mashup on information on the iPad for healthcare : http://lucienengelen.posterous.com/will-apples-ipad-change-healthcare

]]> Comment on Observations 3 February 2010: Questions by Lodewijk http://blog.icmcc.org/2010/02/03/observations-3-february-2010-questions/comment-page-1/#comment-113732 Lodewijk Sun, 07 Feb 2010 06:11:12 +0000 http://blog.icmcc.org/?p=13356#comment-113732 Paul, I don’t understand what you mean with that phrase, because you refer to a definition which I can not find in your post. Paul, I don’t understand what you mean with that phrase, because you refer to a definition which I can not find in your post.

]]> Comment on Observations 3 February 2010: Questions by paul Roemer http://blog.icmcc.org/2010/02/03/observations-3-february-2010-questions/comment-page-1/#comment-113133 paul Roemer Thu, 04 Feb 2010 01:18:43 +0000 http://blog.icmcc.org/?p=13356#comment-113133 I'd be happy to attempt to speak to whatever I wrote that may have left things in disarray on me piece about Health 2.0 I’d be happy to attempt to speak to whatever I wrote that may have left things in disarray on me piece about Health 2.0

]]> Comment on Observations 3 February 2010: Questions by Lodewijk http://blog.icmcc.org/2010/02/03/observations-3-february-2010-questions/comment-page-1/#comment-113009 Lodewijk Wed, 03 Feb 2010 16:13:50 +0000 http://blog.icmcc.org/?p=13356#comment-113009 Lucien, You know you can count on me as we both share the same view. Both your events are included in our events overview. Lucien,
You know you can count on me as we both share the same view. Both your events are included in our events overview.

]]> Comment on Observations 3 February 2010: Questions by Lucien Engelen http://blog.icmcc.org/2010/02/03/observations-3-february-2010-questions/comment-page-1/#comment-112968 Lucien Engelen Wed, 03 Feb 2010 12:11:19 +0000 http://blog.icmcc.org/?p=13356#comment-112968 Dear Lodewijk, There is only ONE sustainable perspective on healthcare, and that is THE PATIENTS PERSPECTIVE. as you know we (Radboud University Nijmegen Medical Centre) at working vastly on embedding this in our vision and more importantly in our practice. http://lucienengelen.posterous.com/real-participatory-healthcare-starts-with-add Also this Thursday we are opening the first Academic Oncologic Centre (RUCO) where patient's perspective will be central focus. With our REshape conferences (http://www.REshape2009.com/en and http://www.participatoryhealthcare.eu ) we try to find the way throughout this voyage. Please join us in this conversation and ambition, but you've always done already ;-) Lucien Dear Lodewijk,

There is only ONE sustainable perspective on healthcare, and that is THE PATIENTS PERSPECTIVE.
as you know we (Radboud University Nijmegen Medical Centre) at working vastly on embedding this in our vision and more importantly in our practice. http://lucienengelen.posterous.com/real-participatory-healthcare-starts-with-add

Also this Thursday we are opening the first Academic Oncologic Centre (RUCO) where patient’s perspective will be central focus.

With our REshape conferences (http://www.REshape2009.com/en and http://www.participatoryhealthcare.eu ) we try to find the way throughout this voyage. Please join us in this conversation and ambition, but you’ve always done already ;-)

Lucien

]]> Comment on EMR? We have an iPhone App for that… by Dr Brian Fisher http://articles.icmcc.org/2010/01/21/emr-we-have-an-iphone-app-for-that%e2%80%a6/comment-page-1/#comment-111314 Dr Brian Fisher Wed, 27 Jan 2010 14:22:07 +0000 http://articles.icmcc.org/2010/01/21/emr-we-have-an-iphone-app-for-that%e2%80%a6/#comment-111314 Sounds good. In the UK, it has been possible for a couple of years for 60% of the UK population to access their records online. They can also do this via their mobiles. Not only do they see their records, they see links to reliable information sources that help them understand what they read. And no app is needed! Brian Sounds good.

In the UK, it has been possible for a couple of years for 60% of the UK population to access their records online. They can also do this via their mobiles. Not only do they see their records, they see links to reliable information sources that help them understand what they read.

And no app is needed!

Brian

]]> Comment on Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach by jd webb http://science.icmcc.org/2009/12/22/web-usage-data-as-a-means-of-evaluating-public-health-messaging-and-outreach/comment-page-1/#comment-110957 jd webb Mon, 25 Jan 2010 05:29:08 +0000 http://articles.icmcc.org/?p=12708#comment-110957 I like what you have to say I like what you have to say

]]> Comment on Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach by Bill Reeves http://science.icmcc.org/2009/12/22/web-usage-data-as-a-means-of-evaluating-public-health-messaging-and-outreach/comment-page-1/#comment-110906 Bill Reeves Sun, 24 Jan 2010 21:17:05 +0000 http://articles.icmcc.org/?p=12708#comment-110906 See the webisite www.cdcchatter.net and the post on the loss of CDC's Credibility by the US Public. News that Reeves UK accomplice, Simon Wessely (a UK Shrink) has had a 40 page document locked down for 83 years from the UK public is out there now. William Reeves and Simon Wessely and the other UK shrinks that have damned and damaged the UK public are in very tight collaboration to ensure that CFIDS/ME is viewed as a psychiatric disorder so that real reseaerch is not done - and has NOT been done by the CDC/CFS shop in 30 years. Congress has beaten on the CDC to get the CFS people to do their job but the CDC/CFS shop people just lie to Congress and go on their merry way of doing stupid studies that further damage the terribly sick. William Reeves KNOWS he is about to be "outed" soon. And the CDC will have no choice but to "retire" him since he has caused so many problems for the CDC and millions of very sick people. This so called "pat on the back" about that stupid CFS site is par for the course. Nothing of value, misleading information, insulting/demeaning to those with CFIDS. Reeves and his thieving contractors - ABT Associates and Emory University MIND-BODY Program need to be investigated and then dealt with by the law. What a horrible waste of taxpayer dollars by the CDC/CFS/William Reeves. And 30 years later, millions of sick are still sick and dying from the most commonly seen CFIDS-related cancers. Disregard anything from the CDC, CDC/CFS and William Reeves. The CDC/CFS website is garbage - pure and simple. See the webisite http://www.cdcchatter.net and the post on the loss of CDC’s Credibility by the US Public. News that Reeves UK accomplice, Simon Wessely (a UK Shrink) has had a 40 page document locked down for 83 years from the UK public is out there now. William Reeves and Simon Wessely and the other UK shrinks that have damned and damaged the UK public are in very tight collaboration to ensure that CFIDS/ME is viewed as a psychiatric disorder so that real reseaerch is not done – and has NOT been done by the CDC/CFS shop in 30 years. Congress has beaten on the CDC to get the CFS people to do their job but the CDC/CFS shop people just lie to Congress and go on their merry way of doing stupid studies that further damage the terribly sick.

William Reeves KNOWS he is about to be “outed” soon. And the CDC will have no choice but to “retire” him since he has caused so many problems for the CDC and millions of very sick people. This so called “pat on the back” about that stupid CFS site is par for the course. Nothing of value, misleading information, insulting/demeaning to those with CFIDS.
Reeves and his thieving contractors – ABT Associates and Emory University MIND-BODY Program need to be investigated and then dealt with by the law.

What a horrible waste of taxpayer dollars by the CDC/CFS/William Reeves. And 30 years later, millions of sick are still sick and dying from the most commonly seen CFIDS-related cancers. Disregard anything from the CDC, CDC/CFS and William Reeves. The CDC/CFS website is garbage – pure and simple.

]]> Comment on Some Pointed Thoughts on Meaningful Use by paul Roemer http://articles.icmcc.org/2010/01/19/some-pointed-thoughts-on-meaningful-use/comment-page-1/#comment-109963 paul Roemer Tue, 19 Jan 2010 19:28:10 +0000 http://articles.icmcc.org/2010/01/19/some-pointed-thoughts-on-meaningful-use/#comment-109963 John, are you aware of any hospitals evaluating whether MU is worth the effort? John, are you aware of any hospitals evaluating whether MU is worth the effort?

]]> Comment on The Ethics of Electronic Health Records by Jeremy Engdahl-Johnson http://science.icmcc.org/2010/01/16/the-ethics-of-electronic-health-records/comment-page-1/#comment-109851 Jeremy Engdahl-Johnson Mon, 18 Jan 2010 18:33:52 +0000 http://articles.icmcc.org/?p=13068#comment-109851 Federal funding may be encouraging a move toward EHR, but there's more to it than just installing systems. How can healthcare data pooling lead to a better system? More at http://www.healthcaretownhall.com/?p=2002 Federal funding may be encouraging a move toward EHR, but there’s more to it than just installing systems. How can healthcare data pooling lead to a better system? More at http://www.healthcaretownhall.com/?p=2002

]]> Comment on New Medsphere Partnerships Promote Widespread Adoption of Electronic Health Records by EMR Vendors http://articles.icmcc.org/2010/01/08/new-medsphere-partnerships-promote-widespread-adoption-of-electronic-health-records/comment-page-1/#comment-109407 EMR Vendors Thu, 14 Jan 2010 19:01:30 +0000 http://articles.icmcc.org/2010/01/08/new-medsphere-partnerships-promote-widespread-adoption-of-electronic-health-records/#comment-109407 Modernized delivery and administration of care by encouraging the widespread use of clinical best practices, medical information technology, and other innovations. Modernized delivery and administration of care by encouraging the widespread use of clinical best practices, medical information technology, and other innovations.

]]> Comment on Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach by John M. http://science.icmcc.org/2009/12/22/web-usage-data-as-a-means-of-evaluating-public-health-messaging-and-outreach/comment-page-1/#comment-108298 John M. Mon, 04 Jan 2010 12:53:14 +0000 http://articles.icmcc.org/?p=12708#comment-108298 As a CFS patient, I would like to add my voice on what a piece of crap the CDC CFS website is as well as the CDC's CFS program itself. CDC has continually ignored the biomedical research literature and approached CFS to be nothing more than psychoneurosis, while at the same time an infectious retrovirus has been spreading amongst the population making millions of people terribly ill and contaminating the nation's(and possibly the world's) blood supplies. Examples of CDC's approach to CFS- -'Dear Sirs, I am SICK..." -Letter written by CDC employee mocking CFS patients and which hung on a message board in CDC for several years until it had to be taken down due to unwanted attention by a journalist, circa 1986- http://oslersweb.com/files/Scan0001.pdf -Primetime Live quoted William Reeves, then and current head of CDC's CFS program, as saying that clusters of CFS were nothing more than 'hysteria' and that no immune abnormalities existed in CFS patients, circa 1996- http://www.me-cvs.nl/index.php?pageid=3474&printlink=true&highlight=burnout -William Reeves, still head of CDC's CFS program, appears on Georgia Public TV circa 2007- Dr. Reeves states that CDC is looking at whether CFS is due to 'different stress patterns [in] men and women', possibly due to 'women or men’s roles and how they’re functioning in their different parts of society'. Pure Victorian gender bias, still going strong at the Centers for Disease Control in 2010. And all this despite the call for new leadership at the CDC's CFS program by 1)the Dept. of Health and Human Services Chronic Fatigue Syndrome Advisory Committee, 2)the largest CFS professional's group in the world, the IACFS/ME, as well as 3)the nation's largest patient charity, the CFIDS Association. The second largest CFS charity in the US, the NCF, told me that the only reason they didn't call for new leadership at CDC/CFS program was that they didn't think it would do any good. So way to go, CDC. All the article above says is that the public looks to CDC for health information, it doesn't say jack about whether the information they are given is worth a tin ****. As a CFS patient, I would like to add my voice on what a piece of crap the CDC CFS website is as well as the CDC’s CFS program itself. CDC has continually ignored the biomedical research literature and approached CFS to be nothing more than psychoneurosis, while at the same time an infectious retrovirus has been spreading amongst the population making millions of people terribly ill and contaminating the nation’s(and possibly the world’s) blood supplies.

Examples of CDC’s approach to CFS-

-’Dear Sirs, I am SICK…” -Letter written by CDC employee mocking CFS patients and which hung on a message board in CDC for several years until it had to be taken down due to unwanted attention by a journalist, circa 1986-
http://oslersweb.com/files/Scan0001.pdf

-Primetime Live quoted William Reeves, then and current head of CDC’s CFS program, as saying that clusters of CFS were nothing more than ‘hysteria’ and that no immune abnormalities existed in CFS patients, circa 1996-
http://www.me-cvs.nl/index.php?pageid=3474&printlink=true&highlight=burnout

-William Reeves, still head of CDC’s CFS program, appears on Georgia Public TV circa 2007-
Dr. Reeves states that CDC is looking at whether CFS is due to ‘different stress patterns [in] men and women’, possibly due to ‘women or men’s roles and how they’re functioning in their different parts of society’. Pure Victorian gender bias, still going strong at the Centers for Disease Control in 2010.

And all this despite the call for new leadership at the CDC’s CFS program by 1)the Dept. of Health and Human Services Chronic Fatigue Syndrome Advisory Committee, 2)the largest CFS professional’s group in the world, the IACFS/ME, as well as 3)the nation’s largest patient charity, the CFIDS Association. The second largest CFS charity in the US, the NCF, told me that the only reason they didn’t call for new leadership at CDC/CFS program was that they didn’t think it would do any good.

So way to go, CDC. All the article above says is that the public looks to CDC for health information, it doesn’t say jack about whether the information they are given is worth a tin ****.

]]> Comment on Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach by Kathryn Stephens http://science.icmcc.org/2009/12/22/web-usage-data-as-a-means-of-evaluating-public-health-messaging-and-outreach/comment-page-1/#comment-108269 Kathryn Stephens Sun, 03 Jan 2010 23:12:33 +0000 http://articles.icmcc.org/?p=12708#comment-108269 What one does not look for, one does not find. The CDC's track record of ignorance is astounding. If my dr(s) even mention 'the CDC says this, or that", I change doctors immediately. When Reeves says some patients have other illnesses, including major depression, instead of CFS/ME, he is forgetting (or purposefully misleading) that ANYONE can get CFS/ME. If one has cancer, they can get CFS/ME. If one has Diabetes, Cardiovascular Disease, MS, GERD, or ANY other illness or recognized disease, they can also get CFS/ME. The guidelines for diagnosing CFS/ME leave out everything that will actually identify it: VIRUSES, VIRUSES, VIRUSES, including EBV, HHV6a and HHV8, CMV, and now, yes, XMRV. The untold suffering the CDC's CFS branch has done borders on criminal behavior, and someday this will be proven, and those responsible held accountable. Until then, patients will rely on real, dedicated scientists who know the truth about CFS/ME. The CDC's CFS program is worthless for the patients. What one does not look for, one does not find. The CDC’s track record of ignorance is astounding. If my dr(s) even mention ‘the CDC says this, or that”, I change doctors immediately.

When Reeves says some patients have other illnesses, including major depression, instead of CFS/ME, he is forgetting (or purposefully misleading) that ANYONE can get CFS/ME.

If one has cancer, they can get CFS/ME. If one has Diabetes, Cardiovascular Disease, MS, GERD, or ANY other illness or recognized disease, they can also get CFS/ME.

The guidelines for diagnosing CFS/ME leave out everything that will actually identify it: VIRUSES, VIRUSES, VIRUSES, including EBV, HHV6a and HHV8, CMV, and now, yes, XMRV.

The untold suffering the CDC’s CFS branch has done borders on criminal behavior, and someday this will be proven, and those responsible held accountable. Until then, patients will rely on real, dedicated scientists who know the truth about CFS/ME.

The CDC’s CFS program is worthless for the patients.

]]> Comment on Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach by Petra http://science.icmcc.org/2009/12/22/web-usage-data-as-a-means-of-evaluating-public-health-messaging-and-outreach/comment-page-1/#comment-108175 Petra Fri, 01 Jan 2010 17:06:33 +0000 http://articles.icmcc.org/?p=12708#comment-108175 This self-congratulatory "study" is absurd - the CDC CFS web site is not just worthless, it contains dangerous misinformation. By the standards used here (number of site visitors) Wikipedia could just as easily call itself the best source of information on the web. This self-congratulatory “study” is absurd – the CDC CFS web site is not just worthless, it contains dangerous misinformation. By the standards used here (number of site visitors) Wikipedia could just as easily call itself the best source of information on the web.

]]> Comment on Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach by Oregano http://science.icmcc.org/2009/12/22/web-usage-data-as-a-means-of-evaluating-public-health-messaging-and-outreach/comment-page-1/#comment-108171 Oregano Fri, 01 Jan 2010 15:17:19 +0000 http://articles.icmcc.org/?p=12708#comment-108171 I wonder how much money was spent on this piece of propaganda - a report patting themselves on the back and continuing to use taxpayers money to pretend they are doing something about Chronic Fatigue SYNDROME. If the CDC's CFS webpage had so many hits, it's because the millions of people who have this disabling disease will look anywhere for information and/or treatment. The CDC's CFS webpage offers NEITHER. Whenever real scientists find something pertinent to CFS, Bill Reeves and his gang of good ole boys tries to squelch the research or undercut the researchers who are really looking for the cause and treatment. Reeves is the Torquemada of CFS research. Any scientist who doesn't subscribe to his religion of psychobabble is either ignored, disdained or excoriated. He must have millions of dollars invested in the antidepressant industry and/or the disability insurance industry. He certainly isn't interested in the health and wellbeing of people who have CFS. I wonder how much money was spent on this piece of propaganda – a report patting themselves on the back and continuing to use taxpayers money to pretend they are doing something about Chronic Fatigue SYNDROME. If the CDC’s CFS webpage had so many hits, it’s because the millions of people who have this disabling disease will look anywhere for information and/or treatment. The CDC’s CFS webpage offers NEITHER. Whenever real scientists find something pertinent to CFS, Bill Reeves and his gang of good ole boys tries to squelch the research or undercut the researchers who are really looking for the cause and treatment. Reeves is the Torquemada of CFS research. Any scientist who doesn’t subscribe to his religion of psychobabble is either ignored, disdained or excoriated. He must have millions of dollars invested in the antidepressant industry and/or the disability insurance industry. He certainly isn’t interested in the health and wellbeing of people who have CFS.

]]> Comment on Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach by Richard Levy http://science.icmcc.org/2009/12/22/web-usage-data-as-a-means-of-evaluating-public-health-messaging-and-outreach/comment-page-1/#comment-108170 Richard Levy Fri, 01 Jan 2010 14:41:20 +0000 http://articles.icmcc.org/?p=12708#comment-108170 "The hits to the site reflect the severity and widespread nature of ME (CFIDS) not the quality of the site, which is a POS, although much improved from several years ago when it was all lies; now I’d say it’s about half and half." I agree with the above statement especially the part that the "hits" are reflective of the number of sick people out there desperatly looking for any information on CFIDS. The CDC is the very last place they should be looking at and instead, should be hitting the websites, blogs, and medical journal sites for real and valid information on CFIDS. Reeves is trying to do anything to keep his job and save his butt. Congress has caught on that there is a serious situation with the CDC/CFS shop and Reeves KNOWS IT. So, he plays these stupid little games that are so transparent that even an uninformed person can see through it. It really is time for the CDC to do something about the CFS program and rid themselves of the PR disaster Reeves and his associates, contractors and all those that came before him have created for the CDC because of gross incompetence, greed, and basic stupidity. IF you need good information on CFIDS/ME google and find the many other sites that provide real and valid research. The CDC/CFS site only offers up pscyhogarbage and insults the sick in every way possible. So, do NOT bother with the CDC website specifically to CFIDS and generally. Something is terribly wrong with the CDC as a whole and I expect that a massive scandal will be taking the CDC down soon. Others believe this as well. “The hits to the site reflect the severity and widespread nature of ME (CFIDS) not the quality of the site, which is a POS, although much improved from several years ago when it was all lies; now I’d say it’s about half and half.”

I agree with the above statement especially the part that the “hits” are reflective of the number of sick people out there desperatly looking for any information on CFIDS. The CDC is the very last place they should be looking at and instead, should be hitting the websites, blogs, and medical journal sites for real and valid information on CFIDS.

Reeves is trying to do anything to keep his job and save his butt. Congress has caught on that there is a serious situation with the CDC/CFS shop and Reeves KNOWS IT. So, he plays these stupid little games that are so transparent that even an uninformed person can see through it.

It really is time for the CDC to do something about the CFS program and rid themselves of the PR disaster Reeves and his associates, contractors and all those that came before him have created for the CDC because of gross incompetence, greed, and basic stupidity.

IF you need good information on CFIDS/ME google and find the many other sites that provide real and valid research. The CDC/CFS site only offers up pscyhogarbage and insults the sick in every way possible. So, do NOT bother with the CDC website specifically to CFIDS and generally. Something is terribly wrong with the CDC as a whole and I expect that a massive scandal will be taking the CDC down soon. Others believe this as well.

]]> Comment on Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach by Justin Reilly http://science.icmcc.org/2009/12/22/web-usage-data-as-a-means-of-evaluating-public-health-messaging-and-outreach/comment-page-1/#comment-107914 Justin Reilly Mon, 28 Dec 2009 16:32:05 +0000 http://articles.icmcc.org/?p=12708#comment-107914 I agree with Sheffield above. This is an elementary school report typical of Reeves shop. Ironic that Reeves questions the worth of the WPI/NCI/Cleveland clinic's XMRV study done by some of the top retrovirologists in the world, when he puts out such typical garbage. The hits to the site reflect the severity and widespread nature of ME (CFIDS) not the quality of the site, which is a POS, although much improved from several years ago when it was all lies; now I'd say it's about half and half. I agree with Sheffield above. This is an elementary school report typical of Reeves shop. Ironic that Reeves questions the worth of the WPI/NCI/Cleveland clinic’s XMRV study done by some of the top retrovirologists in the world, when he puts out such typical garbage. The hits to the site reflect the severity and widespread nature of ME (CFIDS) not the quality of the site, which is a POS, although much improved from several years ago when it was all lies; now I’d say it’s about half and half.

]]> Comment on Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach by Sheffield http://science.icmcc.org/2009/12/22/web-usage-data-as-a-means-of-evaluating-public-health-messaging-and-outreach/comment-page-1/#comment-107650 Sheffield Thu, 24 Dec 2009 08:38:37 +0000 http://articles.icmcc.org/?p=12708#comment-107650 "The CDC CFS website received 3,647,736 views from more than 50 countries over the 18-month period and was the 33rd most popular CDC website"..."The utilization of the CFS website reflects a high level of interest in the illness by visitors to the site. The high utilization shows the website to be an important online resource for people seeking basic information about CFS and for those looking for professional health care and research information" ARE THESE PEOPLE KIDDING? The CDC/CFS website is dreadful, worthless, and has not been updated in four years. The website has NO useful information. The numbers of views show rather powerfully that there is a huge number of CFIDS sick people looking for information. Sadly, the CDC/CFS website IS NOT where they find any information. Instead, they must look elsewhere to other CFIDS websites, blogs and medical sites. The CDC/CFS website is a disgrace. William Reeves is a disgrace. Remove all CFIDS research from the CDC now. “The CDC CFS website received 3,647,736 views from more than 50 countries over the 18-month period and was the 33rd most popular CDC website”…”The utilization of the CFS website reflects a high level of interest in the illness by visitors to the site. The high utilization shows the website to be an important online resource for people seeking basic information about CFS and for those looking for professional health care and research information”

ARE THESE PEOPLE KIDDING? The CDC/CFS website is dreadful, worthless, and has not been updated in four years. The website has NO useful information. The numbers of views show rather powerfully that there is a huge number of CFIDS sick people looking for information. Sadly, the CDC/CFS website IS NOT where they find any information. Instead, they must look elsewhere to other CFIDS websites, blogs and medical sites. The CDC/CFS website is a disgrace. William Reeves is a disgrace. Remove all CFIDS research from the CDC now.

]]> Comment on United States government grows a family health tree, helping people trace hand-me-down genetic risks by Probate Research http://science.icmcc.org/2009/03/31/united-states-government-grows-a-family-health-tree-helping-people-trace-hand-me-down-genetic-risks/comment-page-1/#comment-107116 Probate Research Wed, 16 Dec 2009 18:15:34 +0000 http://www.icmcc.org/?p=7156#comment-107116 I run a Professional Genealogy company (www.meetyourfamily.co.uk) and as someone who also has Multiple Sclerosis, I think that the idea of people having a family health tree is a great idea. The ability to see a person’s full family medical history provides a better view of the situation and, forewarned is forearmed. I run a Professional Genealogy company (www.meetyourfamily.co.uk) and as someone who also has Multiple Sclerosis, I think that the idea of people having a family health tree is a great idea. The ability to see a person’s full family medical history provides a better view of the situation and, forewarned is forearmed.

]]> Comment on Personal Health Records: A Lifesaver for Hospitalized Patients? by Lodewijk http://articles.icmcc.org/2009/12/16/personal-health-records-a-lifesaver-for-hospitalized-patients/comment-page-1/#comment-107115 Lodewijk Wed, 16 Dec 2009 17:06:04 +0000 http://articles.icmcc.org/2009/12/16/personal-health-records-a-lifesaver-for-hospitalized-patients/#comment-107115 Although I agree with the general idea in this post, unfortunately the <strong><a href="http://www3.interscience.wiley.com/journal/123207830/abstract" rel="nofollow">Cumbler article</a></strong> does not have an abstract and a <strong><a href="http://www.medpagetoday.com/HospitalBasedMedicine/Hospitalists/17431" rel="nofollow">review</a></strong> by prof. S. Zalman does not mention the use of EHR or PHR in the survey. Although I agree with the general idea in this post, unfortunately the Cumbler article does not have an abstract and a review by prof. S. Zalman does not mention the use of EHR or PHR in the survey.

]]> Comment on How Patients Use Access To Their Electronic GP Record – A Quantitative Study by Lodewijk http://recordaccess.icmcc.org/2009/07/20/how-patients-use-access-to-their-electronic-gp-record-%e2%80%93-a-quantitative-study/comment-page-1/#comment-105820 Lodewijk Tue, 17 Nov 2009 14:55:30 +0000 http://www.icmcc.org/2009/07/20/how-patients-use-access-to-their-electronic-gp-record-%e2%80%93-a-quantitative-study/#comment-105820 Dear Maryalice, I have asked the presenter to answer your question. Dear Maryalice, I have asked the presenter to answer your question.

]]> Comment on How Patients Use Access To Their Electronic GP Record – A Quantitative Study by Maryalice Jordan-Marsh http://recordaccess.icmcc.org/2009/07/20/how-patients-use-access-to-their-electronic-gp-record-%e2%80%93-a-quantitative-study/comment-page-1/#comment-105811 Maryalice Jordan-Marsh Tue, 17 Nov 2009 14:01:10 +0000 http://www.icmcc.org/2009/07/20/how-patients-use-access-to-their-electronic-gp-record-%e2%80%93-a-quantitative-study/#comment-105811 This paper is very important in terms of the range of topics covered. The ICMCC website has bullets stating there is evidence for the benefits of personal record access. However, it is difficult to find the references. Is this paper available? This paper is very important in terms of the range of topics covered. The ICMCC website has bullets stating there is evidence for the benefits of personal record access. However, it is difficult to find the references. Is this paper available?

]]> Comment on Keeping track by e-Patient Dave http://blog.icmcc.org/2009/11/15/keeping-track/comment-page-1/#comment-105472 e-Patient Dave Sun, 15 Nov 2009 22:36:12 +0000 http://blog.icmcc.org/2009/11/15/keeping-track/#comment-105472 You are amazing. :) You are amazing. :)

]]> Comment on Keeping track by Lodewijk http://blog.icmcc.org/2009/11/15/keeping-track/comment-page-1/#comment-105443 Lodewijk Sun, 15 Nov 2009 18:50:31 +0000 http://blog.icmcc.org/2009/11/15/keeping-track/#comment-105443 Dave, Done! http://articles.icmcc.org/feeds/ Dave,
Done! http://articles.icmcc.org/feeds/

]]> Comment on Keeping track by e-Patient Dave http://blog.icmcc.org/2009/11/15/keeping-track/comment-page-1/#comment-105438 e-Patient Dave Sun, 15 Nov 2009 17:47:24 +0000 http://blog.icmcc.org/2009/11/15/keeping-track/#comment-105438 Lodewijk, Clearly we have a problem, that more people aren't aware of what you do! This could have made quite a difference in the US debate. Shame on us. Here's my problem: I never find time to browser web sites looking for these good things, not even in an RSS reader. Maybe I should. But I really benefit from FeedBurner email subscriptions. If you're willing, please set one up. Lodewijk,

Clearly we have a problem, that more people aren’t aware of what you do! This could have made quite a difference in the US debate. Shame on us.

Here’s my problem: I never find time to browser web sites looking for these good things, not even in an RSS reader. Maybe I should. But I really benefit from FeedBurner email subscriptions. If you’re willing, please set one up.

]]> Comment on Can I Say No to an Electronic Health Record? by Jeremy Engdahl-Johnson http://articles.icmcc.org/2009/11/09/can-i-say-no-to-an-electronic-health-record/comment-page-1/#comment-104380 Jeremy Engdahl-Johnson Mon, 09 Nov 2009 15:51:54 +0000 http://articles.icmcc.org/2009/11/09/can-i-say-no-to-an-electronic-health-record/#comment-104380 Federal funding may be encouraging a move toward EHR, but there's more to it than just installing systems. How can healthcare data pooling lead to a better system? More at http://www.healthcaretownhall.com/?p=1499 Federal funding may be encouraging a move toward EHR, but there’s more to it than just installing systems. How can healthcare data pooling lead to a better system? More at http://www.healthcaretownhall.com/?p=1499

]]> Comment on A Randomized Trial Comparing Telemedicine Case Management with Usual Care in Older, Ethnically Diverse, Medically Underserved Patients with Diabetes Mellitus: 5 Year Results of the IDEATel Study by Lodewijk http://science.icmcc.org/2009/07/05/a-randomized-trial-comparing-telemedicine-case-management-with-usual-care-in-older-ethnically-diverse-medically-underserved-patients-with-diabetes-mellitus-5-year-results-of-the-ideatel-study/comment-page-1/#comment-103430 Lodewijk Tue, 03 Nov 2009 19:20:42 +0000 http://www.icmcc.org/?p=9700#comment-103430 I couldn't answer your question. But there is an email link on the abstract page I couldn’t answer your question. But there is an email link on the abstract page

]]> Comment on A Randomized Trial Comparing Telemedicine Case Management with Usual Care in Older, Ethnically Diverse, Medically Underserved Patients with Diabetes Mellitus: 5 Year Results of the IDEATel Study by Louiza Patsis http://science.icmcc.org/2009/07/05/a-randomized-trial-comparing-telemedicine-case-management-with-usual-care-in-older-ethnically-diverse-medically-underserved-patients-with-diabetes-mellitus-5-year-results-of-the-ideatel-study/comment-page-1/#comment-103247 Louiza Patsis Mon, 02 Nov 2009 23:08:24 +0000 http://www.icmcc.org/?p=9700#comment-103247 Will this trial be continued? How did you know that telemedicine resulted in the differences? For instance, some patients may have obtained a trainer or nutritionist. I am trying to use telemedicine as a topic in a dissertation in information science. Will this trial be continued? How did you know that telemedicine resulted in the differences? For instance, some patients may have obtained a trainer or nutritionist. I am trying to use telemedicine as a topic in a dissertation in information science.

]]> Comment on EMR, EHR and HIPAA Wiki by Joe http://articles.icmcc.org/2009/09/16/emr-ehr-and-hipaa-wiki/comment-page-1/#comment-101281 Joe Fri, 23 Oct 2009 21:51:24 +0000 http://articles.icmcc.org/2009/09/16/emr-ehr-and-hipaa-wiki/#comment-101281 I had trouble finding the actual link to the wiki mentioned on this page. For anyone also encountering that problem, here is the link. http://emrandhipaa.com/wiki/Main_Page I had trouble finding the actual link to the wiki mentioned on this page. For anyone also encountering that problem, here is the link.
http://emrandhipaa.com/wiki/Main_Page

]]> Comment on Health 2.0 from a distance, once more by Anne Marie Cunningham http://blog.icmcc.org/2009/10/08/health-2-0-from-a-distance-once-more/comment-page-1/#comment-99436 Anne Marie Cunningham Mon, 12 Oct 2009 08:42:17 +0000 http://blog.icmcc.org/?p=11799#comment-99436 @markhawker was asking if we could model which patients wanted to be involved, but I think it is much more complex than this. Depending on the type of decision, and the illness, and the intervention, and how well one is feeling, and many other things one may want to be involved or not. The health care professional therefore has to try and check every time. Oh, and we need more time! 10 minute consultations are insufficient! The research on all this in many ways still seems to be in its infancy. @markhawker was asking if we could model which patients wanted to be involved, but I think it is much more complex than this. Depending on the type of decision, and the illness, and the intervention, and how well one is feeling, and many other things one may want to be involved or not. The health care professional therefore has to try and check every time.

Oh, and we need more time! 10 minute consultations are insufficient!

The research on all this in many ways still seems to be in its infancy.

]]> Comment on Health 2.0 from a distance, once more by Lodewijk http://blog.icmcc.org/2009/10/08/health-2-0-from-a-distance-once-more/comment-page-1/#comment-99418 Lodewijk Mon, 12 Oct 2009 05:59:15 +0000 http://blog.icmcc.org/?p=11799#comment-99418 I do agree, not all patients want to be involved. But only when having the full choice you can choose not to. I am sure that many patients will tell their GP or another caregiver that they want them to "manage" their records and care and continue to work to some extend in the "old" way. But it is essential that the patient is entitled to have all the options open and available. I think that the education should start early and has to be combined with other general educational efforts to make people more aware of their growing responsibility for their own life, even in parts of the world where certain social aspects of life are well organised. Thus we can hopefully find the balance that we will need between an "organised" social society (medicine, care, unemployment, etc.) and a market oriented one. Lodewijk I do agree, not all patients want to be involved. But only when having the full choice you can choose not to. I am sure that many patients will tell their GP or another caregiver that they want them to “manage” their records and care and continue to work to some extend in the “old” way. But it is essential that the patient is entitled to have all the options open and available.
I think that the education should start early and has to be combined with other general educational efforts to make people more aware of their growing responsibility for their own life, even in parts of the world where certain social aspects of life are well organised. Thus we can hopefully find the balance that we will need between an “organised” social society (medicine, care, unemployment, etc.) and a market oriented one.
Lodewijk

]]> Comment on Health 2.0 from a distance, once more by anne marie cunningham http://blog.icmcc.org/2009/10/08/health-2-0-from-a-distance-once-more/comment-page-1/#comment-99346 anne marie cunningham Sun, 11 Oct 2009 16:36:12 +0000 http://blog.icmcc.org/?p=11799#comment-99346 I was teaching some second year students last week. They haven't started communication skills teaching yet. One was remarking that his doctor asked him, "What do you think?" He didn't know how to answer. Sometimes this question does work to reveal patients anxieties, or their ideas about the causes of their problems, or how these problems could be managed. Others are anxious because they don't have any answers to those questions and they feel perplexed by their illness. I will recommend Anne Marie Mol's "The Logic of Care and the problem of Patient Choice" again. You may disagree with what she says but I think we do have to recognise that care can take many forms and not all patients want to be involved in making decisions on their care when they are unwell. So how do we tell the patient? Anne Marie I was teaching some second year students last week. They haven’t started communication skills teaching yet. One was remarking that his doctor asked him, “What do you think?” He didn’t know how to answer. Sometimes this question does work to reveal patients anxieties, or their ideas about the causes of their problems, or how these problems could be managed. Others are anxious because they don’t have any answers to those questions and they feel perplexed by their illness.
I will recommend Anne Marie Mol’s “The Logic of Care and the problem of Patient Choice” again. You may disagree with what she says but I think we do have to recognise that care can take many forms and not all patients want to be involved in making decisions on their care when they are unwell.
So how do we tell the patient?
Anne Marie

]]> Comment on Secondary Use of Health Information is Exciting – But Don’t Forget the Primary Use! by Lodewijk http://articles.icmcc.org/2009/10/08/secondary-use-of-health-information-is-exciting-but-don%e2%80%99t-forget-the-primary-use/comment-page-1/#comment-98597 Lodewijk Thu, 08 Oct 2009 06:28:03 +0000 http://articles.icmcc.org/2009/10/08/secondary-use-of-health-information-is-exciting-but-don%e2%80%99t-forget-the-primary-use/#comment-98597 It is a pity to see that this promising title "Don't forget the primary use" apparently does not leave space to talk about the use of data in relation to the patient. Of course, a physician doing his job (more) properly due to the data available is very important, but using the data to inform the patient and help him make decision is at least as important. It is a pity to see that this promising title “Don’t forget the primary use” apparently does not leave space to talk about the use of data in relation to the patient. Of course, a physician doing his job (more) properly due to the data available is very important, but using the data to inform the patient and help him make decision is at least as important.

]]> Comment on Meaningful use, where is the patient? by Lodewijk http://blog.icmcc.org/2009/10/02/meaningful-use-where-is-the-patient/comment-page-1/#comment-98524 Lodewijk Wed, 07 Oct 2009 19:39:00 +0000 http://www.icmcc.org/?p=11621#comment-98524 Paul, you raise legitimate questions. Some of them are typical for the US situation as the financing of healthcare is so different. But there is one element that seems to be universal, we have not been able to really explain to people, either professional or patient/citizen, what the benefits are. And IMHO it was a mistake to leave the patient out of the decelopping process for such a long time, therefore neglecting aspects of safety, confidentiality and access (on both sides). Paul, you raise legitimate questions. Some of them are typical for the US situation as the financing of healthcare is so different. But there is one element that seems to be universal, we have not been able to really explain to people, either professional or patient/citizen, what the benefits are.
And IMHO it was a mistake to leave the patient out of the decelopping process for such a long time, therefore neglecting aspects of safety, confidentiality and access (on both sides).

]]> Comment on Meaningful use, where is the patient? by paul roemer http://blog.icmcc.org/2009/10/02/meaningful-use-where-is-the-patient/comment-page-1/#comment-98522 paul roemer Wed, 07 Oct 2009 19:25:54 +0000 http://www.icmcc.org/?p=11621#comment-98522 I think three years from know we will see that meaningful use proved to be a smokescreen which demonstrated no meaningful use. I also think there is benefit in looking at why healthcare providers have to be offered money and subjected to potential fines to do something that is supposed to be good for them. In turn, why do they then need to be pushed into rolling it out according to someone's timetable who's not even a part of their organization. 1. Why are providers running from EHR instead of towards EHR? 2. Why do they have to be paid to implement EHR? 3. Why do they have to be cajoled to roll it out according to somebody else's time table? I think three years from know we will see that meaningful use proved to be a smokescreen which demonstrated no meaningful use.

I also think there is benefit in looking at why healthcare providers have to be offered money and subjected to potential fines to do something that is supposed to be good for them. In turn, why do they then need to be pushed into rolling it out according to someone’s timetable who’s not even a part of their organization.

1. Why are providers running from EHR instead of towards EHR?
2. Why do they have to be paid to implement EHR?
3. Why do they have to be cajoled to roll it out according to somebody else’s time table?

]]> Comment on For the record … by Jeremy Engdahl-Johnson http://articles.icmcc.org/2009/10/03/for-the-record-%e2%80%a6/comment-page-1/#comment-97998 Jeremy Engdahl-Johnson Sat, 03 Oct 2009 22:39:20 +0000 http://www.icmcc.org/?p=11641#comment-97998 Federal funding may be encouraging a move toward EHR, but there's more to it than just installing systems. How can healthcare data pooling lead to a better system? More at http://www.healthcaretownhall.com/?p=1499. Federal funding may be encouraging a move toward EHR, but there’s more to it than just installing systems. How can healthcare data pooling lead to a better system? More at http://www.healthcaretownhall.com/?p=1499.

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