Monthly Archives: June 2014

Why The NIH Pathways To Prevention Systematic Review For M.E. and CFS Is Negligent!

Why The NIH Pathways To Prevention Systematic Review For M.E. and CFS Is Negligent!

An Explanation!

 

First I want to say, I became an Registered Nurse in 1985. So my point of view is not of a patient, it is as of an R.N.

When I decided to take a look at the Pathways to Prevention Systematic Review for M.E. I saw right away that it was clearly negligent and harmful to M.E. patients.

I then thought the medical people who have this illness need to start speaking up about the negligence we have witnessed the last 20+ years. What I wrote below is also part of the letters that I also have written Beth Collins Sharpe AHRQ, and Dr. Francis Collins.

The authors who were paid to write the NIH Pathways To Prevention (P2P) Systematic For M.E. obviously did not have M.E. expertise, because they wrote a negligent document recommending unsafe non medical treatment that is harmful to M.E. patients.

Proof of Negligence, Bioethics Violations, and Harm associated with the NIH P2P Study For M.E. and CFS!

NIH P2P Systematic Review For M.E. published online 5/2/2014.

The NIH P2P systematic review was supposed to be designed to further research.

This review will not further research as it contains non medical therapy which is harmful to M.E. patients.

The authors of this review did not exclude non-medical therapy GET/Grade Exercise Therapy which is harmful to M.E. and CFS patients.

The authors were negligent in not excluding the non-medical therapy of GET/Graded Exercise Therapy from the NIH P2P review for M.E. and CFS patients as the results of the 3 different research groups were known before publishing date of May 2nd, 2014.

 

Evidence used for the NIH P2P Systematic Review cited 6 definitions for M.E. and CFS:

Centers for Disease Control and Prevention Fukuda et al.,1994
Canadian Carruthers et al., 2003
Revised Canadian Jason et al., 2010
International Consensus Statement Carruthers et al., 2011
London Dowsett, 1994
Oxford Sharpe, et al. 1991

All of cited definitions except the Oxford definition point out post activity exacerbation of symptoms after trivial amount of activity, physical or mental fatigue or muscle weakness after minimal exertion which may persist long after exertion ends, Post Exertional Neuro-Immune Exhaustion, Post Exertional Malaise.

The authors of the NIH P2P Systematic Review for M.E. and CFS allowed The Oxford definition criteria of GET/Graded Exercise Therapy to “slip through the cracks” and to be included in the systematic review as one of the non-medical treatments for M.E. and CFS.

Allowing Oxford criteria or recommendations was NEGLIGENCE of the authors, because it does not include that key piece of data in the definition which states that GET or Graded Exercise Therapy causes a post activity, whether physical or cognitive, exacerbation symptoms, long after exertion ends, Post Exertional Neuro-Immune Exhaustion, or Post Exertional Malaise.

The NIH P2P Review for M.E. and CFS was published on May 2nd, 2014, which was after 3 CPET VO2 Max Studies, that were completed by 3 different research teams stated below:

Dr. Enlander of the Mt Sinai Medical Center in NYC: November 20th, 2013: “Incorrect Govt Criteria Hurts Chronic Fatigue Syndrome Patients, New Research Finds:” http://bit.ly/1hX7MFm

Dr. Snell and Dr VanNess of the Workwell Foundation in California: June 23rd, 2013
http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short
http://www.workwellfoundation.org/research-and-latest-news/

Dr.Betsy Keller in Ithaca NY: September 17, 2013
“A FOREIGN & ILLOGICAL RESULT” DR. B KELLER ON EXERCISE TESTING IN ME CFS”
http://www.prohealth.com/library/showarticle.cfm?libid=18349
http://beforeitsnews.com/health/2013/10/exercise-physiologist-prof-betsy-keller-mecfs-patients-will-respond-abnormally-to-2-day-cardiopulmonary-exercise-tests-2-2508464.html

All 3 different research groups, in 3 different centers, where CPET VO2 Max testing using the Stevens Protocol was performed, all resulted in the same findings!

Findings:

-Abnormal Recovery Response to Aerobic Exercise- up to 7 days

-Decreased Functional Capacity or a drop in VO2 Max during test #2, 24 hours after test #1 due to metabolic abnormalities, thus causing post activity or exercise exacerbation of symptoms, PEM, PENE

-M.E. and CFS participants were unable to reproduce most physiological measures at both maximal and ventilatory threshold intensities during a CPET performed 24 hours after a prior maximal exercise test.

-Decrease in anaerobic threshold from test 1 to test 2 causing a decrease or lower threshold for physical activity.

-Results from the second test indicate the presence of a CFS related post-exertional fatigue

-Significant Post Exertional Amplification of Symptoms.

-Ability to generate energy from the aerobic system is significantly impaired.

These results correlate with Dr. Enlander’s statement- “INCORRECT GOVERNMENT CRITERIA IS HARMFUL TO CHRONIC FATIGUE SYNDROME PATIENTS, NEW RESEARCH FINDS!”

These results correlated with what patients have said for the last 30 years.

THE RESULTS OF THE 3 CPET VO2 MAX STUDIES PERFORMED BY THE 3 DIFFERENT RESEARCH GROUPS, SHOW THAT THE 1991 OXFORD DEFINTION FOR CFS IS OUT OF DATE, OBSOLETE, DOES NOT APPLY TO ME OR CFS, AND IS HARMFUL TO PATIENTS WITH ME AND CFS!

Because of these results, there is no way that Oxford Definition criteria can be used in good conscience at this point, because of clear bioethical issues, negligence by the authors, and if allowed to be used will be a bioethical violation and negligence by the P2P Panel knowing that the non medical therapy of GET is in fact harmful to ME and CFS patients.

No where on the NIH Pathways To Prevention Systematic Review
For ME and CFS does it make any reference in regards to “Informed Consent.” The goal of Informed Consent is for the patient to be an informed participant in their health care decisions including information of all of the available treatments including the benefits and the risks, so the patient can make an informed judgement or decision in regards to the treatment including whether or not to participate.

Further Info regarding Informed Consent:

https://research.uncc.edu/departments/office-research-compliance-orc/human-subjects/informed-consent

https://depts.washington.edu/bioethx/topics/consent.html

I searched even further to see what the requirements are for authors writing a systematic review in regards to informed consent.

The Journal Of Physical Therapy which endorces the ICMJE guidelines has a page about “Information for Authors: Requirements for Systematic Reviews” which gives very easy to understand instructions in how to format a systematic review.  Proof that the principles outlined in the Declaration of Helsinki were followed are to be included in the “Methods” section of the systematic review.

If we take a look at the actual systematic review, which is the research protocol, no where in the ‘Methods Section” do I even see a mention of informed consent or the Declaration of Helsinki which is the “Ethical Principles for Medical Research Involving Human Subjects.”

There was also noted that there is no disclosure to non-medical lay people who will be participating in this process that the non-medical therapy of GET is harmful to ME and CFS patients which would be a violation of the Declaration of Helsinki

“GET” has also been known to be lethal as well. Brynmor John died immediately following Graded Exercise Therapy or GET as he was walking out of the doors of the gym at the House of Commons in England. http://en.wikipedia.org/wiki/Brynmor_John

This review was not checked and proof read properly before it was published online. If so, the authors would’ve noted those 3 studies, included the issue of informed consent, disclosure to the Non Medical lay people, as well as GET or Graded Exercise Therapy being potentially lethal to ME patients. That document is clearly negligent.

The Non-Medical Therapy of GET or Graded Exercise Therapy will not advance research via the NIH P2P Study for ME and CFS as it is a therapy that is harmful to ME and CFS patients.

This NIH P2P Systematic Review for ME and CFS patients MUST be retracted and MUST be canceled as it will not advance research as explained above, has bioethical violations, is negligent, and is harmful to ME and CFS patients.

Additional evidence has been recently written by an M.D. named Dr. Larry Baldwin, who is a Vascular Surgeon and disabled by M.E. for 20 years. Dr. Baldwin just wrote a guest post called: “Post Exertional Debility” which was surprisingly posted on the Solve CFS Initiative website (formerly known as the CAA). Dr Larry Baldwin explains post exertional debilitation in regards to this illness which happens to be the hallmark symptom of M.E.

http://solvecfs.org/guest-post-dr-larry-baldwin-on-post-exertional-debility-in-mecfs/

Furthermore, if I as an R.N. was employed by a center where GET or Graded Exercise Therapy was actually done, and didn’t double check this, questions this, and refuse to allow the patient to go forth with this, I could be sued as well as the doctor, my nursing license would be revolked if the patient became permanently disabled and unable to work. This would happen because of all of the documentation and proof that GET or Graded Exercise Therapy is indeed harmful to M.E. patients. This is the reason patients are unseen, because they are homebound because of this.

Lets look at the common sense factor here.  The authors used 6 different “CFS” defintions as part of their guide to write the NIH P2P Review for ME and CFS.  Out of the 6 of the defintions, 5 of the definitions point out post activity, post cognitive, post exertional, and post exercise debilitation.

So if 5 out of the 6 defintions say that patients experience debilitation after anything that has to do with any type of activity, then why is GET or Graded Exercise Therapy being used as a non-medical therapy in the NIH P2P Study for ME when its quite clear that Graded Exercise Therapy will harm the patients?  Quite frankly, this is no different than the Tuskeegee Syphillis Experiment!

Reknown ME and CFS researcher and clinician Dr. Paul Cheney was quoted as saying at an Invest in ME conference in May of 2010: “The whole idea that you can take a disease like this and exercise your way to health is foolishness… It is insane.”

I agree with Dr. Cheney, because I know, I am a patient with this illness and I like many of the rest of us patients with this illness have tried exercising our way back to health. If we were all able to exercise our way back to health, we wouldn’t be disabled and homebound, we would’ve returned back to work years ago!

No one in their right mind would want to be in the condition that these patients are in, I can assure you. Just like Dr. Cheney said, trying to “exercise your way back to health is not only foolish, but it is insane! Thus, there you have my opinion regarding the NIH P2P Study for M.E. and CFS, its nothing less than insane!

I myself, see this not just as a patient, I see this through R.N eyes, and this is unacceptable, and there is no excuse for this. M.E. patients have suffered terribly and unnecessarily for 20-30 years and unfortunately at the hands of incompetent and non-compassionate medical professionals.

For this patient group to continuously suffer because of faulty and negligent illness criteria and non medical therapy, is getting beyond negligent, it is a crime.

All health care practitioners, including myself because I made the promise of “Do No Harm.”

“Do No Harm” means we are supposed to help patients, not harm the patients.

Unfortunately, “Do No Harm” became virtually non-existent when it was thrown out of the window 20-30 years ago for patients diagnosed with M.E. or CFS.

M.E. patients will continue to suffer harm if the NIH Pathways To Prevention Systematic Review for M.E. and CFS is not retracted and the December workshop is canceled. The reason M.E. patients will continue to suffer harm is because of the lack of information regarding GET or Graded Exercise Therapy and because of the non M.E. expertise people who will be participating in the study.

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!

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My Correspondance with Beth Collins Sharp RN of ARHQ

 

 

My Correspondance with Beth Collins Sharp RN of ARHQ Regarding The NIH Pathways To Prevention Systematic Review for ME and CFS.

May 2nd, 2014,  The NIH Pathways To Prevention Systematic Review for ME and CFS was published.  When I heard it had been published, I went to the ARHQ website where it was published to take a look at it.

When I read that document, the nurses cap automatically went back on my head and I started thinking like an R.N. I say this because as soon as I read that document, I saw right away that it was clearly negligent and thought, the medical people with this illness need to really start speaking up and I must contact someone regarding this.

I looked for the link on the website to where I could contact the authors regarding this, I found the link and I sent them a message, which started my correspondence with ARHQ and Beth Collins Sharp RN.

Below are copy and pastes of the actual email communications with ARHQ and Beth Collins Sharp.

May 2nd:

The correspondence starts May 2th with my comment via the feedback to the authors:

Discussion Thread
—————————————————————
Customer By Web Form (Name Not Given) – 05/02/2014 02:48 PM Hello, Im writing in regards to the systematic review that is planned for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome that was just published and put on this site yesterday,  Its very very bad, the evidence to be reviewed, more than 1/2 of it is biased and incorrect evidence for the reveiwers to review!!  I would really like someone to contact me back at my email above about this.

Response from AHRQ on May 5th:

—– Forwarded Message —–
From: AHRQ Effectivehealthcare

To: “Me
Cc: “Ramage, Kathryn (AHRQ) (AHRQ Contractors)”

AHRQ Effectivehealthcare
Sent: Monday, May 5, 2014 2:32 PM
Subject: RE: Site Feedback [systematic review for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ]

Thank you for your recent inquiry to the Agency for Healthcare Research and Quality (AHRQ).

The protocol for this project was posted on the Effective Health Care (EHC) Program website, however, the research review itself is still in progress.  The draft version of this report will be posted for public comment on the EHC website, and we welcome any comments and feedback that you have regarding this topic at that time.  The key questions for this topic were also posted for public comment, however, that time period has closed.

Please feel free to visit the following link to join the EHC email list to learn about recently released products for public comment and final posting:  http://www.effectivehealthcare.ahrq.gov/index.cfm/join-the-email-list1/

We appreciate your interest in AHRQ’s Effective Health Care Program and the resources that we produce.

Sincerely,

The AHRQ Effective Health Care Program

 

 

My Reply to ARHQ on May 5th:

From: Me
Sent: Monday, May 05, 2014 3:33 PM
To: Ramage, Kathryn (AHRQ) (AHRQ Contractors)
Subject: Fw: Site Feedback [systematic review for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ]

Dear Kathryn,

The email states you forwarded my feedback.
I didn’t send feedback to be placed on an email list, I send feedback to be directed to a person.
I and other patients would rather talk to a specific person than get our legal team involved.

Thankyou,

 Me

(I figured the mention of the “Legal Team” would get a faster response)

 

 

Response from Beth Collins Sharp on May 7th:

From: “Collins Sharp, Beth (AHRQ)”
To: Me
Cc: “Ramage, Kathryn (AHRQ) (AHRQ Contractors)”
Sent: Wednesday, May 7, 2014 12:07 PM
Subject: RE: Site Feedback [systematic review for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ]

Hello Ms,

First, I am sorry it was difficult to be referred to me. The staff working with the general e-mail addresses have been given new routing directions.

More to the point, I am happy to try and answer your questions and respond to your concerns as it relates to the systematic review process and AHRQs role in this project. If your questions bump up against confidentiality or policies where I cant share information, I will be up front about that and when possible, explain why. As you probably know, I am AHRQs ex-Officio to the CFSAC and have past experience with the EPC program.

Thank you for contacting us. I’ll look forward to another e-mail from you and try to help where I can.

Thank you, Beth
___________________________________________

Beth A. Collins Sharp, PhD, RN, FAAN
Senior Advisor, Women’s Health and Gender Research
Senior Advisor for Nursing
Agency for Healthcare Research and Quality

 

 

My Reply to Beth Collins Sharp June 7th

From: Me
Sent: Saturday, June 07, 2014 4:12 AM
To: Collins Sharp, Beth (AHRQ)
Subject: Re: Site Feedback [systematic review for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ]

Hello Beth,

It thought the original response was from one of those automated systems when I received a response from from my feedback. I have to be honest, im surprised to see your email. Thankyou for writing me back.

Because of this illness, I could not write you back sooner. I am writing you now. I may register to speak over the phone during the CFSAC meeting and repeat the words im saying here to you.

My name is Anne LiConti. Im a long time patient with this illness. Before I became a long time patient, I was an active Registered Nurse almost 10 years, my employment included working at a very large well known medical center in New York City where I am originally from. I know you are an RN too, as you know, after working in one of those medical centers, you can work anywhere and you learn early on how things work, like this review that is planned to be done.

The NIH Systematic Review for the P2P program has a clear Bioethics violation in it.
There is outdated information in this review, that is harmful to patients if it is allowed to be used in the evidence review.

There has been multiple studies, with proven evidence, by 3 different research groups, that was known before this review was written. Therefore, this review is an unethical, bioethics violation and must be stopped!

It is obvious, that the authors who wrote this review, do not have any type of expertise in the care of the ME patient. If they did, they would know that evidence that is being used in this review will cause irreversible harm, disability and has even been fatal to patients. If they do have expertise, then they are negligent.

There is nothing in this review that proves disclosure of the issue. The non medical lay people who are going to be involved in this process, they do not have knowledge of the inaccurate evidence because not only are they not practitioners, they are non medical lay people.

Beth Maier made a statement, which I heard while I was watching the video where the process of this P2P review was being explained, or should I say, that she was attempting to explain.

Beth mentioned “The Jury Model.”

Quite frankly, patients are not criminals that sit in front of a jury for the jury to decide whether or not that they receive correct or incorrect care. This “Jury Model” is a disgrace to medicine. There is no other way to word that.

I have been a patient in this community for 20 years. While I was active in the RN field, I would’ve never dreamed of being treated the way the patients in this community have been treated. I never saw anything like this in my life. I cant believe I am actually a patient in this patient community where we are dealing with a situation that is far beyond unethical in the year 2014. This is a disgrace, has been a disgrace, and continues to be a disgrace.

Because of the bioethical issues regarding evidence in this review, it would be of all due conscience, in other words, because of the oath that was promised by all of the practitioners involved, and that is “Do No Harm”, thus, this review must be stopped!

Thankyou,

 

 

Response from Beth Collins Sharp June 11th

On Wednesday, June 11, 2014 4:23 PM, “Collins Sharp, Beth (AHRQ)”
wrote:

Hello Anne,

When I didn’t hear from you before, I assumed that the ME/CFS was hitting you hard. I’m glad you were able to write back.

I agree that it’s hard to be a nurse and see how little progress has been made over the years. That’s why, in my role as Ex-Officio for AHRQ, I’m trying to listen carefully to patients and apply it to what I know about the systematic review process. There is a clear message from patients and advocates that they are concerned about harms from specific treatments. The protocol for the systematic review includes looking at harms so the manuscripts that document the harms should be considered also. That is a routine in these reviews and the researchers are used to considering the harms.

I cant comment about the non-experts on the Panel. AHRQ is not involved in the selection of the Panel. I will say that the members of the panel are recommended by experts and the P2P has a long history of doing very well at putting together a responsive panel.

I recognize that we feel differently about this. My past experience with the P2P program and the AHRQ systematic reviews influences my more positive outlook. Just as your experience with ME/CFS influences your view. More importantly, even though our views are different, I would like to say that I respect your opinions and will keep them in mind in our CFSAC work.

I will listen for your voice on the phone next week during public testimony.

Sincerely, Beth
___________________________________________

Beth A. Collins Sharp, PhD, RN, FAAN
Senior Advisor, Women’s Health and Gender Research
Senior Advisor for Nursing
Agency for Healthcare Research and Quality

 

 

My  Reply to Beth Collins Sharp June 13th

This reply is where I told Beth SPECIFICALLY WHY the Systematic Review for the NIH Pathways to Prevention for ME and CFS is Negligent and has Bioethical Violations!

To Collins Sharp, Beth (AHRQ)

Jun 13 at 2:03 AM

Hello Beth,

I was not able to get my request in on time to be heard via phone call during the CFSAC meeting.

I will be more specific in this letter why the Systematic Review for the P2P for ME and CFS is in error.

The authors who were paid to write that review, obviously did not have M.E. expertise, because they wrote a negligent document,  recommending unsafe non medical treatment that is harmful to M.E. patients.

Here are the reasons why:

NIH P2P Systematic Review For ME published online 5/2/2014.

The NIH P2P systematic review was supposed to be designed to further research.

This review will not further research as it contains non medical therapy which is harmful to M.E. patients.

The authors of this review did not exclude non-medical therapy GET/Grade Exercise Therapy which is harmful to ME and CFS patients.

The authors were negligent in not excluding the non-medical therapy of GET/Graded Exercise Therapy from the NIH P2P review for ME and CFS patients as the results of the 3 different research groups were known before publishing date of May 2nd, 2014.

Evidence used for the NIH P2P Systematic Review cited 6 defintions for ME and CFS:
-Centers for Disease Control and Prevention Fukuda et al., 1994
-Canadian Carruthers et al., 2003
-Revised Canadian Jason et al., 2010
-International Consensus Statement Carruthers et al., 2011
-London Dowsett, 1994
-Oxford Sharpe, et al. 1991


All of cited defintions except the Oxford definition point out post activity exacerbation of symptoms after trivial amount of activity, physical or mental fatigue or muscle weakness after minimal exertion which may persist long after exertion ends, Post Exertional Neuro Immune Exhaustion, Post Exertional Malaise.


The authors of the NIH P2P Systematic Review for ME and CFS allowed The Oxford definition criteria of GET/Graded Exercise Therapy to “slip through the cracks” and to be included in the systematic review as one of the non-medical treatments for ME and CFS. This was NEGLIGENCE of the authors, because it does not include that key piece of data in the definition which states that GET or Graded Exercise Therapy causes a post activity, whether physical or cognitive, exacerbation symptoms, long after exertion ends, Post Exertional Neuro-Immune Exhaustion, or Post Exertional Malaise.


This NIH P2P Review for ME and CFS was published on May 2nd, 2014, which was after 3 CPET VO2 Max Studies, that were completed by 3 different research teams stated below:


Dr. Enlander of the Mt Sinai Medical Center in NYC: November 20th, 2013: “Incorrect Govt Criteria Hurts Chronic Fatigue Syndrome Patients:
http://bit.ly/1hX7MFm



Dr. Snell and Dr VanNess of the Workwell Foundation in California: June 23rd, 2013 http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short

http://www.workwellfoundation.org/research-and-latest-news/


Dr. Betsy Keller in Ithaca NY: September 17, 2013 http://beforeitsnews.com/health/2013/10/exercise-physiologist-prof-betsy-keller-mecfs-patients-will-respond-abnormally-to-2-day-cardiopulmonary-exercise-tests-2-2508464.html


All 3 different research groups, in 3 different centers, where CPET VO2 Max testing using the Stevens Protocol was performed, all resulted in the same findings!

Findings:


-Abnormal Recovery Response to Aerobic Exercise- up to 7 days


-Decreased Functional Capacity or a drop in VO2 Max during test #2, 24 hours after test #1 due to metabolic abnormalities, thus causing post activity or exercise exacerbation of symptoms, PEM, PENE


-ME/CFS participants were unable to reproduce most physiological measures at both maximal and yentilatory threshold intensities during a CPET performed 24 hours after a prior maximal exercise test.


.-Decrease in anaerobic threshold from test 1 to test 2 causing a decrease or lower threshold for physical activity.


-Results from the second test indicate the presence of a CFS related post-exertional fatigue


-Significant Post Exertional Amplification of Symptoms.

-Ability to generate energy from the aerobic system is significantly impaired.

These results correlate with Dr. Enlander’s statement- INCORRECT GOVERNMENT CRITERIA IS HARMFUL TO ME AND CFS PATIENTS, NEW RESEARCH FINDS!

These results correlated with what patients have said for the last 30 years.

THE RESULTS OF THE 3 CPET VO2 MAX STUDIES PERFORMED BY THE 3 DIFFERENT RESEARCH GROUPS, SHOW THAT THE 1991 OXFORD DEFINTION FOR CFS IS OUT OF DATE, OBSOLETE, DOES NOT APPLY TO ME OR CFS, AND IS HARMFUL TO PATIENTS WITH ME AND CFS!

Because of these results, there is no way that Oxford Definition criteria can be used in good conscience at this point, because of clear bioethical issues, negligence by the authors, and if allowed to be used will be a bioethical violation and negligence by the P2P Panel knowing that the non medical therapy of GET is in fact harmful to ME and CFS patients.

There was also noted that there is no disclosure to non-medical lay people who will be participating in this process that the non-medical therapy of GET is harmful to ME and CFS patients.

The Non-Medical Therapy of GET or Graded Exercise Therapy will not advance research via the NIH P2P Study for ME and CFS as it is a therapy that is harmful to ME and CFS patients.

This NIH P2P Systematic Review for ME and CFS patients MUST be retracted and MUST be canceled as it will not advance research as explained above, has bioethical violations, is negligent, and is harmful to ME and CFS patients.

Beth, the error in the treatment recommendation can be equated to a medication error that results in permanent harm and disability to the M.E. patient, as this particular treatment has resulted in permanent disability to the M.E. patients for the last 30 years. In no way, will this review advance research.

This review was not checked and proof read properly before it was published online.  If so, the authors would’ve noted those 3 studies and included disclosure to the Non Medical lay people.  That document is clearly negligent.

In addition, an M.D. named Dr. Larry Baldwin, who is a Vascular Surgeon, disabled by M.E. 20 years, just wrote  a guest post called: “Post Exertional Debility” that was surprisingly posted on the Solve CFS Initiative website (formerly known as the CAA).

http://solvecfs.org/guest-post-dr-larry-baldwin-on-post-exertional-debility-in-mecfs/


It was posted on May 14th 2014 but there is still plenty of time to stop the P2P study as it is harmful and negligent to M.E. patients.

M.E. patients and patient advocates will be protesting this. M.E. patients are tired of unethical and negligent treatment recommendations. Its obvious that no one has listened to this patient group at all.


I myself, see this not just as a patient, I see it through R.N eyes, and this is unacceptable, and there is no excuse for this.


If we as RN’s, were employed by a center where GET therapy was done, and we didn’t double check this, questions this, refuse to allow the patient to go forth with this,  we would be sued because this therapy permanently disabled patients. This is the reason patients are unseen, because they are homebound because of this.


The 1994 Fukuda Definition, the way it was written in 1994, the Symptom “Post Exertional Malaise” was on the bottom of the list of symptoms.  The CDC changed it and put that symptom on the top.


“Post Exertional Malaise” is the incorrect wording of this symptom because the symptom isn’t “Malaise”, its severe muscle weakness. Malaise is not weakness, and fatigue is not weakness. Its the same symptom that Post Polio Syndrome patients get.


I know what you are going to say, so I will correct you first, only 1-3% of polio patient suffered paralysis, 7-9% who were diagnosed did not, the other 90% did not know that their “summer flu” was a polio infection.


The wording “Post Exertional Malaise” was deceiving, because doctors did not pay attention, they had no idea what it was, that’s why for 30 years, patients have been saying “I get worse after activity, exercise, reading, and the practitioners, had no idea what the patients were talking about because of the way that was written.

The 1994 Fukuda Defintion was a negligent document, just like this P2P for ME is negligent.


Like I said, the patients and patient advocates will continue to the protesting since before the IOM studied commenced.

Thankyou for your time,

Anne LiConti

 

 

Response from Beth Collins Sharp June 13th

Collins Sharp, Beth (AHRQ) Thank you Anne, The information that you provided is very informative. I will look at the links that you provided. I hope you have a nice weekend,

Beth
___________________________________________

Beth A. Collins Sharp, PhD, RN, FAAN
Senior Advisor, Women’s Health and Gender Research
Senior Advisor for Nursing
Agency for Healthcare Research and Quality

 

 

My  Reply to Beth Collins Sharp June 15th

 

To Collins Sharp, Beth (AHRQ),Me
Jun 15 at 12:54 PM

Beth,

Thankyou very much for replying to my emails and reading what I put in the emails.  I know you are busy, just a few more words.

This patient group has suffered unnecessarily. For this patient group to continuously suffer because of faulty and negligent illness criteria and non medical therapy, is getting beyond negligent and is becoming a crime.

The patients have suffered actually by the actions of a key person in the world of “CFS”, who was employed by the NIH, no longer with us anymore.

You probably know who I am talking about, there are also documents that were retrieved by an advocate, via FOIA, with the mans own words pretty much saying what he did.

His own words prove his actions to be intentional.

What that man did was a crime to millions of patients who are disabled and not here with us anymore. The people who aren’t here are not are all victims of self euthanasia/suicide.

That man, whose painting happens to be hanging in the NIH as some distinguished researcher,  manipulated the name of an illness that is a horrible illness to have to live with, this illness is torture!! He downplayed this illness by changing the name (which caused the patients harm and abuse by the name alone) and downplayed it more by changing the key hallmark symptom of the illness by downplaying it, to something that would not be considered something that disabled the patients.

Because of what was done, there is a whole community of patients, that we dont even know the numbers of, CDC’s numbers are wrong, who are disabled and homebound now for the last 20 years, and im one of them, because of the actions of that individual.

This illness is a life thief!!

I just want to point out why I said what I said about the 1994 Fukuda Definition for “CFS” being a negligent document.  Any saavy malpractice attorney, could prove that definition negligent with a Websters dictionary.

They would not even need any type of medical book, or a 140 on the Stanford Benet IQ test,  all they would need is a Webster’s dictionary.

This patient community is owed a serious apology, a serious apology!

There have been deaths because of GET or Graded Exercise.  Here is one of them:  http://en.wikipedia.org/wiki/Brynmor_John

Brynmor John.  He actually dropped as he was walking out of the doors of the gym at the House of Commons in England right after he did his GET session.

What makes it more negligent- is because he probably didn’t have a previous stress test to see if it was safe for him to do that GET because this illness is treated as a psych disease in England.  Because of “CFS” he probably didn’t even get a physical exam.   I know that because it happens over here to many patients.

I also know that because I was a cardiac rehab nurse in 2 different cardiac rehab centers. Patients didn’t exercise on any type of machines until they had a stress test to see if it was safe.

Brynmor John’s Case made the news because he was some type of politician over there.

Another example of  a patient who died because of no physical exam Casey Fero, 23 years old.
http://www.investinme.org/Article%20011-Casey%20Fero.htm

I know you have heard the name. His mother is an advocate.  If Casey got a proper physical exam, any doctor who listened to his heart, would’ve heard abnormal heart sounds. I know, I was a CCU nurse at NY Hospital/Cornell Medical Center (now New York Presbyterian Hospital, etc..)

I also know this, because of what the condition of what heart was in on that autopsy that was done,  that kid was having arrythmia’s for a long time and they never knew. I his heart condition was picked up like it should’ve been, he would’ve been a candidate for a heart transplant and still possibly be here.

***Casey died of myocarditis that is, his heart was infected with disease. There was inflammation, and the tissue was full of viral infection. Casey also had old fibrosis, indicating that the viral infection was not of a new onset.**”

When I heard about and read what the results of his autopsy was, I was outraged, I couldn’t believe it. I thought, how the heck could anyone miss that.  You know why it was missed, because when he said “CFS”, no one took him seriously, they either said to him “there is no such thing’ or “he was depressed.”

There have also been deaths because patients need IVIG. A patient named Irene Romano, wrote a blog called “Laughing from my Sick Bed”, died in January.  Irene said she had bronchitis, was on antibiotics and strict bedrest, she said she had 3 previous life threatening episodes of pneumonia.

She was only 61, 61 is still too young to die from that, if she was 80, I would agree with everyone, not 61. She should’ve been getting IVIG.

http://laughingfrommysickbed.blogspot.com/
http://www.kepnerfuneral.com/obituaries/Irene-Romano/

One more example, but this one is about disability, and
a very sad case. Jessica Taylor.  You may have heard her name.

Here is a video of her:

You never saw kids in the condition she was in unless they were going to die soon.

Jessica Taylor just stood up for the first time in 8 years.

She could not get out of her bed for 8 years!  That could be your daughter or my daughter.

She and many other children are the same condtion, because of this exercise issue!!!

This is beyond negligent!

There was a promise made, an even by me because im an RN and that was “Do No Harm.”  “Do No Harm” went out of the window 20-30 years ago in regards to the patients who were diagnosed with “CFS.”

Thankyou again Beth for reading my email. I do hope to be able to get to the next CFSAC or another related meeting, and say everything that I said to you in these emails.

Im actually available by phone, if for some reason, some of the people who are scheduled to speak, are unable to speak during the meeting.  If so, send me an email and I will send you my phone number.

Thankyou,
Anne LiConti

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!


The Fukuda Defintion, Negligence, & Webster’s Dictionary

The Fukuda Definition, Negligence, & Webster’s Dictionary

Friends in the world of M.E. and other friends,
Have you ever really analyzed the 1994 Fukuda Definition for CFS?
This is a very interesting analysis!

If you analyze the 1994 Fukuda Definition for CFS, its actually a negligent document.  You can actually prove that its a negligent using a Webster’s dictionary, you don’t even need a medical textbook.

When I finish explaining this, you will agree and say “I never thought of that.”

Back in 1994 when I first received a copy of the Fukuda Definition for CFS, I looked it over, saw I had most of the symptoms, thought ok, and then I put it away in my file with all of the rest of the information I was gathering at the time about the illness.

I didn’t really pay attention to the details of all of the illness symptoms because not everyone has all of the symptoms of any particular illness.  Because not everyone has every single symptom of any particular illness, when I saw the symptom called “malaise,” I thought, thats one of the symptoms I don’t have, because none of the symptoms I had included “malaise.”

I think probably everyone who received that document and read it over did the same thing. When a patient received the document, the patient looked at the list of symptoms and looked for which symptoms they had and counted them.  If they were a health practitioner such as a doctor, they read the document to become familiar with the symptoms so they could diagnose a patient as it was a guide for the doctor to use sort of like the CDC toolkit on the CDC website is supposed to be a guide.  We didn’t have the internet then, so we didn’t have a CDC toolkit or website.

Just to clarify, i’m saying “CFS” and not M.E. because that’s what was the illness was being called here in the U.S. in 1994, and that’s what was on the document that was said to be the case definition for the illness.

What we also have is a case of words being used interchangeably. Words that are used interchangeably can be very harmful when it comes to an illness definition. In the case of the 1994 Fukuda Definition for CFS, something very significant was overlooked. Something very significant was overlooked because of words that were interchangeably used. Because of words that were interchangeably used, we have a whole patient community, who are disabled and homebound. We aren’t even sure of the exact numbers because the CDC’s numbers are not correct.

So which words am I talking about?

What I want to point out first is, CFS or Chronic Fatigue Syndrome is not the name of the illness. The actual name of the illness is M.E. or Myalgic Encephalomyelitis. If you didn’t know this, I can almost hear your thoughts. Yes, the name of the illness is Myalgic Encephalomyelitis. Where did the name Chronic Fatigue Syndrome come from? I really can not tell you, I can only tell you that the leader of the definition team, who was an employee of the NIH changed the name from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome.

The next question I will answer “What actually is M.E. or Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis (ME) is a neuroimmune disease with serious immune and cardiovascular abnormalities with resulting serious CNS (central nervous system) consequences due to brain injury. The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, and cancer. The pain, cognitive impairment and exhaustion are often literally unspeakable. Most times ME strikes relatively quickly (within hours, days, weeks). Once active and productive children and adults are robbed of vitality, with disability ranging from completely bedridden to somewhat functional. Variable disability usually progresses to premature death.”

We not only have a case of words being used interchangeably, there is a bit of a problem with the name change. We will get back to the interchangeable words after we finish talking about the names used for this illness and then the significance of the interchangeable names.

The description of M.E. speaks for itself, I don’t need to explain that any further. If you want to read further about M.E., you can click here to read about it.

If you think of those 2 names, which name would you prefer the illness to be called if you had the illness? M.E. or CFS.?

If you had to tell a doctor or someone that you had an illness called Chronic Fatigue Syndrome, do you think they would take you as seriously then if the name was called Myalgic Encephalomyelitis?

Do you think the treatment or care you receive would be any different if the name was called CFS instead of M.E.?

What do you think when you hear the name Chronic Fatigue Syndrome?

What do you think your family or your friends would think if you told them today that  you had an illness called Chronic Fatigue Syndrome?

What do you think many doctors think when they hear the name Chronic Fatigue Syndrome if they aren’t familiar with the name?

If you had to choose, which name would you pick, Chronic Fatigue Syndrome or Myalgic Encephalomyelitis?

Those are interesting questions to think about because one day you may be faced with this condition or someone in your family, your husband, your wife, your children, etc.. The people reading this who have the illness know what I am trying to point out.

Think about what the patients who have this condition feel when they have to say “Chronic Fatigue Syndrome” as opposed to “Myalgic Encephalomyelits.”

Do you think the patients may have been treated different because of the name Chronic Fatigue Syndrome?

Do you ever think patients would be subjected to abuse from medical people because of the name of their illness?

Do you think patients would be harmed because of the name Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome

In 1994 a case definition was published for CFS that was called The CDC (Fukuda 1994) Definition for Chronic Fatigue Syndrome. The list of symptoms on the original document of the 1994 Fukuda Definition for CFS looked were listed this way:

•substantial impairment in short-term memory or concentration;
•sore throat;
•tender lymph nodes;
•muscle pain;
•multi-joint pain without swelling or redness;
•headaches of a new type, pattern, or severity;
•unrefreshing sleep; and
•post-exertional malaise lasting more than 24 hours.

To be diagnosed with CFS, according to the 1994 Fukuda Defintion for CFS you had to have 4 of those symptoms.

If you look at those symptoms, where would you look first for the most important symptom, the top of the list or the bottom of the list?

That is actually an important question because where would most people automatically look?

Most people whether they are a doctor or a non medical lay person would look at the top of the list.

The CDC finally took notice after it was brought to their attention, and probably thought the same thing, and changed the order of that list May 14, 2012. If you look at the CDC Website, the list of symptoms are listed this way since May 14, 2012:

•post-exertion malaise lasting more than 24 hours
•unrefreshing sleep
•significant impairment of short-term memory or concentration
•muscle pain
•pain in the joints without swelling or redness
•headaches of a new type, pattern, or severity
•tender lymph nodes in the neck or armpit
•a sore throat that is frequent or recurring

If you look at the 2 different lists, the symptom that was on the bottom of the original list, “post-exertional malaise lasting more than 24 hours”, was put on the top of the list the in 2012.

It took 18 years for the CDC to make that change!

Why did the CDC change the order in which the symptoms were written changing the order to where the symptom that was originally on the bottom of the list to the top of the list?

The symptom of “post-exertional malaise lasting more than 24 hours” is actually the key hallmark symptom of the illness. The way the definition presented the list of symptoms in 1994, that symptom was on the bottom.  That information was brought to the attention to the CDC, but the order of the list wasn’t changed by the CDC and put on their website until May 14, 2012.

Why would where that symptom be listed be a problem?
The symptom was originally listed on the bottom of the list.
The word that is used in the symptom is called “Malaise.”

We know the symptom was listed on the bottom of the list and we know the word that was used was the word “Malaise.”

What is wrong with the word “Malaise”?

We have to take a look at the meaning of the word “Malaise” to determine the reason.

“Malaise”

Webster’s Dictionary:

Ma`laise´

n. 1. (Med.) An indefinite feeling of uneasiness, or of being sick or ill at ease.

Noun 1. malaise – physical discomfort (as mild sickness or depression)
Synonyms: unease, uneasiness

Why would doctors or health practitioners possibly ignore that particular symptom?

According to the definition above, the word “Malaise” would not be considered something serious, something mild as in mild sickness or could even be something considered psychological such as depression.

The symptom was also originally placed on the bottom of the list..

Most people, whether doctors or lay people both groups are going to look at the top of the list first, because the most important or key symptom of an illness is usually placed at the top of the list, the least important on the bottom of the list.

Post-exertional malaise lasting more than 24 hours” was listed on the bottom of the list, and the word “malaise” was the word used to describe the symptom. Because of those 2 factors, that was something that was very easily missed.  It was also something that was very easily dismissed as a key hallmark symptom of the illness.

I want to point out that most health practitioners at the time, in 1994, in this country did not have knowledge of M.E., because they did not have knowledge of the M.E. epidemics because M.E. was not taught in the medical schools in this country or in the medical textbooks. The leader of the illness definition team did have knowledge of M.E. because he had access to  the documents of all of the M.E. epidemics that were documented since 1934 and they were used during the redefinition effort at the NIH as well as the CDC.

The Interchangeable Words!

What are those interchangeable words and what is the significance of the interchangeable words?

The three interchangeable words involved are Malaise, Fatigue, and also Weakness.

We have to look at the meanings of those three words.

We already went over “Malaise” but I will put the meaning here again.

Malaise

Webster’s Dictionary:

Ma`laise´

n. 1. (Med.) An indefinite feeling of uneasiness, or of being sick or ill at ease.

Noun 1. malaise – physical discomfort (as mild sickness or depression)
Synonyms: unease, uneasiness

I personally never attributed my symptoms to malaise, because the symptom was not malaise, it was more severe than malaise.

Fatigue

1fa·tigue

-weariness or exhaustion from labor, exertion, or stress

-the temporary loss of power to respond induced in a sensory receptor or motor end organ by continued stimulation

I always thought fatigue was ridiculous too because back then, I wondered why they picked “fatigue” for the name, because our symptom was more severe than fatigue.

Anyone can feel weary if they are tired, and have a lack of energy too. A lack of energy can be any condition. Our symptom is more severe than just a lack of energy, because people can still work with a lack of energy, they can still get through the day.

Weakness

ˈwiːk.nəs

“lacking strength or energy, or likely to stop working 

“Alack of physical or muscle strength and the feeling
that extra effort is required to move your arms, legs, or other muscles.
If muscle weakness is the result of pain,
the person may be able to make muscles work, but it will hurt.”

When we are crashed, or post exertional anything for that matter, what happens?
We are in bed because we cant move.
There were times when I personally was so weak, I could not sneeze, my body was too weak to go through the motion to actually sneeze.

Our symptom is an abnormal severe total body muscular weakness with little to no functionality, after any type of activity whether trivial, cognitive, exertional, exercise, with an abnormal recovery response of up to 7 days, and even weeks or months, and that’s what makes the illness a debilitating, disabling illness. As well as the other symptoms we get with this illness including immune abnormalities, at the same time that we experience the abnormal severe muscular weakness with an abnormal recovery response that are exacerbated and cause debilitation after activity whether trivial, cognitive, exertional or exercise.

Malaise and Fatigue are like a gust of wind compared to weakness.

That’s the difference between the 3 words that are being used interchangeably, they are not the same, they are different.

That’s why the Fukuda Defintion is incorrect, why its negligent, and can be proven negligent with a Webster’s Dictionary just like I demonstrated above.

You don’t even need a medical book, you just need a dictionary!

This is also why people are homebound and disabled, because of that incorrectly worded definition that doctors didn’t pay attention too because they didn’t equate it with what we were actually feeling.

That’s why there were many doctors who said to people they need to exercise, because they didn’t understand what the patients were talking about when the patients said they felt worse. The CDC said to tell the patients to keep exercising and that’s what the doctors did.  This is all because of the interchangeable use of the words “fatigue” and “malaise.”

Doctors also said patients were depressed because Malaise is actually a psychological word too.  Doctors thought patients were depressed, that post-exertional malaise could’ve been interpreted as depression after exertion.

It’s also actually an example of what I call “hear-say” medicine, they “hear” what other practitioners are saying and then they start preaching the same thing. Instead of just going by hear-say, these practitioners should of done a little research and check the actual medical books in regards to the epidemics to see if the document they received, which was the 1994 Fukuda Definition for CFS was indeed correct. That’s what should’ve been done when that definition came out in 1994. Practitioners should’ve double checked to see what they were reading was actually correct.

The thing that was always told to doctors and nurses and that was , always double check, always “CYA.”

If you don’t double check and “CYA,” you will be in danger of not only harming patients, but getting sued and losing your medical or nursing license.

Malaise shouldn’t of even touched the definition of this illness!

The use of the word “malaise” actually harmed and permanently disabled people because it was interchangeably used to make the illness look less severe and even psychiatric.

Notice how doctors that aren’t used to saying M.E. keep saying “Chronic Fatigue”, because they were told the name of this illness was “Chronic Fatigue Syndrome” and that is what it was being called for 20 years.  They need to practically be “reprogrammed” to call it the right name!

This is the same thing that is happening with those interchangeable words.
They have used those words so interchangeably, they don’t even know the difference.

If these people are going to be in the “helping people profession”, they need to know the difference in the meanings of these words and use them correctly. The interchangeable use of the words has harmed patients.

The question I ask anyone who has read this,

Should these patients, ME, CFS or whatever name the illness is being called today,  or any other patients for that matter, have been treated the way these patients have been treated?

Aren’t these patients people too?

There is something called “Do No Harm” which was promised by all health practitioners including myself when we graduated our nursing and medical programs.

Did these patients escape “harm”?

As far as a patient being diagnosed with a diagnosis of “Chronic Fatigue Syndrome”, “Do No Harm” was thrown out of the window 20-30 years ago.

What makes this patient group any less deserving of the same patient care as any other group?

Why was this patient group treated in such a fashion?

This patient group was treated this way, because of the name of the illness called “Chronic Fatigue Syndrome” which had nothing to do with fatigue.

And,

Because of the incorrect placement and wording of the key hallmark symptom of the illness called “Post-Exertional Malaise” in which malaise had nothing to do with that symptom, this patient community was harmed, this patient community suffered abuse from medical people, this patient community suffered the lack of care or no care, this patient community suffered not only disability, but this patient community are invisible because they are unable to leave their homes and many are unable to leave their beds.

Not only the 1994 Fukuda Defintion for CFS was negligent, but it was also a crime to humanity!

The reasons I described are probably the biggest reasons why this illness is in such a sad state of affairs!

Incorrect and interchangeable use of those simple words which the names of symptoms contributed to that sad state of affairs!

Will the patients get even as much as an apology?

At this point, I cant answer that question.

Dr Jose Montoya was quoted as saying:

“Hopefully one day, my dream is that our medical community will produce a formal apology to the patients that – not having believed them all these years – they are facing a real illness.”

I hope the same thing that Dr. Montoya hopes, that our medical community will apologize to this patient community who have not been believed and are ill, disabled and homebound.

 

“The Other Side Of The Stretcher” (c) 2014

 This blog is not for medical advice.
For medical advice, you must speak with your physician!


“Post Exertional Malaise,” A Sociopathic Orchestration!

“Post Exertional Malaise, a Sociopathic Orchestration”

I think the discussion of the term “Malaise” is overdue for those of us in the #ME world.

“Malaise” in the case of “CFS” was the product of a sociopathic orchestration.

Back track to 1994:

When I received a copy of the 1994 Fukuda definition of CFS  from Dr. Susan Levine when it first came out, “Post Exertional Malaise” was on the bottom of the list of symptoms.

To be honest, when I first saw that, I thought what the heck is that.
I thought that because “Malaise” as a “symptom”, was sort of something
describing, for example:

“I feel like im getting a cold”
“I feel funky today, I don’t know why”
“I feel like im coming down with something”

or basically

“The blahhhs”

“Malaise” always seemed to be attached to something psychological not medical.

Here are some definitions of Malaise from different dictionaries I found online:

Miriam Webster:

mal·aise noun \mə-ˈlāz, ma-, -ˈlez\

medical : a slight or general feeling of not being healthy or happy
: a problem or condition that harms or weakens a group, society, etc.

EasyBib

Full Definition of MALAISE

: an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness

: a vague sense of mental or moral ill-being

Examples of MALAISE

The symptoms include headache, malaise, and fatigue.
An infected person will feel a general malaise.
The country’s current economic problems are symptoms of a deeper malaise.

Dictionary Reference
http://dictionary.reference.com/browse/malaise

ma·laise [ma-leyz, -muh-; French ma-lez] Show IPA

noun
1. a condition of general bodily weakness or discomfort, often marking the onset of a disease.

2. a vague or unfocused feeling of mental uneasiness, lethargy, or discomfort.

Origin:
1760–70; < French, Old French; see mal-, ease

Dictionary.com Unabridged
Based on the Random House Dictionary, © Random House, Inc. 2014.
Cite This Source | Link To malaise

Collins

World English Dictionary

malaise (mæˈleɪz)

— n
1. a feeling of unease or depression
2. a mild sickness, not symptomatic of any disease or ailment
3. a complex of problems affecting a country, economy, etc: Bulgaria’s economic malaise

[C18: from Old French, from mal bad + aise ease ]

 

“Malaise”

I guess im trying to say “malaise” was not something that was used
to describe something “serious,” “devastating,” “disabling,”
and definately not something potentially “lethal.”

The dictionary definition examples show that to be true.

This really goes very deep.
If you think about how Stephen Straus manipulated the use of this word,
he was even more sociopathatic than we previously thought.

Why do I say this?

I say this because most every practitioners in this country received a copy of the 1994 Fukuda definition for CFS, as well as every hospital in the country at that time.
This was because the “Yuppie flu” or “Epstein Barr” was a big item in the news.

“Yuppie Flu” was in the newspaper or on the tv news almost every week.

“Yuppie Flu” was a big news story in New York because there were a lot of people considered “Yuppies” who worked in Manhatten such as high achieving career people, Wall Street people, etc…

Everyone wanted to know what the heck that “Yuppie Flu” was!
Was it a real illness?
Was it burnout?
Was it the high achiever thing?
Was it just whiney women?

Now,

A practitioner looks at the list of symptoms on the 1994 Fukuda definition,
http://www.cfids-me.org/cdcdefine.html
(that’s what the document looked like in 1994)

2. The concurrent occurrence of four or more of the following symptoms:

  • substantial impairment in short-term memory or concentration;
    sore throat;
    tender lymph nodes;
    muscle pain;
    multi-joint pain without swelling or redness;
    headaches of a new type, pattern, or severity;
    unrefreshing sleep; and
    post-exertional malaise lasting more than 24 hours.

Post-exertional malaise is on the bottom of that list.

In someones mind, they look at the list, the most important symptom
would be on the top of the list, not the bottom of the list.

A practitioner that would take a look at that list,
“malaise” wouldn’t seem important to them, nothing serious,
the patient had the feeling like they were “coming down with something.”

Here we are as a group of patients, telling our doctors,
when we over-do, we get sicker,
But they don’t “understand” or “get it.”

Instead, doctors were told to tell the patients to exercise or do GET/Graded Exercise Therapy, because the patients were deconditioned from that flu they had that made them stay in bed a few weeks.

When the patients said they felt worse when they were exercising,
the doctors attributed that to an “endurance” thing, and they told the
patients to keep exercising even though the patients felt lousy,
that the lousy feeling will go away, as they build up that endurance like a jogger  or a marathon runner in training, that they will feel better!

Or whatever the wording was that the patients practitioner used to say why the patient should keep exercising.

Dr Cheney told patients of his, from the get-go.
“Do not exercise”, “No aerobic exercise.”

Dr. Cheney has been quoted saying:
“The idea that someone can exercise their way back to health with this illness, is foolish, it is even insane.” (Not sure if those are the exact words but its close)

It would probably be safe to say, that 99.9% of the practitioners
in this country, who didn’t know this illness,
did not tell their patients about the exercise issue or even warn them against it because the physician did not know this key piece of data about the illness.

The practitioners also told their patients to exercise because the CDC said so,
so if the CDC said the patient must exercise, the CDC must be right.

 

What does the exercise do, or end up doing?

We all know what it does,

It permanently disables patients, patients end up housebound/bedbound for years
or the rest of their life.

It also has been fatal, which reminds us of that sad case from England- Brynmor John
http://www.hfme.org/houseboundandbedbound.htm

“Research has also proven that how much physical and cognitive overexertion a person can tolerate without serious damage depends on the severity of their illness. For example, we know that moderately affected patients can die from exercise sessions. For example, there is the case of the UK MP Brynmor John who had M.E. and was advised to ˜exercise himself back to fitness and who as a result of complying with this advice collapsed and died coming out of the House of Commons gym. ”

Brynmor John dropped dead from GET!
No other way to say it, he dropped dead!

Oh, and I forgot to mention the most important thing. The name of the illness is not “CFS” its M.E. or Myalgic Encephalomyelitis!

 

Stephen Straus,

What did he do?

Stephen Straus took the most disabling hallmark symptom of the illness,
which I have no doubt that he knew,
because he had documents about M.E. there at the NIH,
turned the focus on “fatigue” or just “tired”,
which would throw any practitioner off that didn’t know better,
because many of the practitioners here did not have experience with
M.E.

NIH also teaches, people do fellowships there, etc..
They probably have a huge library.
Many of the cluster epidemics through the years,
since 1934, were in this country,
not just Incline Village and Lyndonville NY.
The first one being in Los Angeles in 1934.

Incline Village and Lyndonville NY were the 2 that got all of the news attention.

NIH and CDC had this information, we know this because the ME epidemics were
discussed by the illness definition teams in 1988 and 1994. NIH had this information in that huge library on their campus.

So, what happened to so many patients including many of us or all of us?

We were slammed because of the lack of knowledge,
because of what Stephen Straus did!

Stephen Straus orchestrated not only “CFS”, “Fatigue”,
changing M.E. or Myalgic Encephalomyelitis to CFS or Chronic Fatigue Syndrome,
but took the symptom that was the most disabling, devastating
symptom of all of of the symptoms,
put it on the bottom of the list,
GAVE IT THE WRONG NAME- a psychological name,
thus throwing off most every practitioner who saw that document,
so they wouldn’t pay attention to it, or think it was a key symptom on the list.

In his mind, his goal was to make the patients look like a bunch of crazy complainers with maladaptive thoughts.

What he actually did was sociopathic!

He ignored the promise that he made of

“DO NO HARM”

and not only harmed, but caused a devastation of lives,
suffering that no one ever should have to go through.

Deceived and basically did a scam job on everyone at the NIH, CDC, and practitioner in this country and around the world.

If not, then he was NIH’s patsy.

But,

He did it intentionally with no conscience!

Someone who acts in such a manner with no emotion,
feeling, conscience, is called a Sociopath!

Dictionary.com defines it as:

noun Psychiatry.

“a person with a psychopathic personality whose behavior is antisocial, often criminal, and who lacks a sense of moral responsibility or social conscience.”

I don’t think the patients have ever been the crazy ones,
or have had maladaptive thoughts….

The orchestrator of this 30 year mess,
was most definitely mistaken portraying the patients
as people having maladaptive thoughts.

I think we all know who the person with the maladaptive thinking was,
And it was not any of the patients!

The orchestrator was the one with the maladaptive thinking!

 

Read Stephen Straus own Words *Here* and *Here*

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!