Tag Archives: Gulf War Illness

One More Update

Love

 

One More Update from Brooke.

Her doctor was able to get hospice care reinstated for her for 60 days.

Today, we live in a time where, being sick is not acceptable, and people who have misunderstood chronic illnesses, there aren’t many medical practitioners who are cut out to care for them.  Not only not cut out to care for them, they have no compassion and pass the patients off as depressed.

Today, it seems as if you don’t have something like cancer or AIDS, your illness doesn’t qualify, as in Brooke’s case, her hospice care was discontinued because she wasn’t “considered to be dying.”  That’s just so awful.

People with chronic illness who are basically living a “living death”, there are no words because I can’t even think of the words because I’m one of those people.  I know I myself will probably die alone, no hospice, no support, nothing.  And I know there is nothing I can do about it. I have come to accept it because unfortunately that’s the way it is.

I ask everyone to pray for peace and comfort for Brooke during this time.

 

Documenting M.E.

Dear Friends,

Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.

First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me…

View original post 924 more words

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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!


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 Other Side Of The Stretcher- My Personal Story

 

 

 

 

 

May 12th Is ME Awareness Day!

 

My Personal Story

The Other Side Of The Stretcher”

 

Where did I get that name “The Other Side Of The Stretcher?”

I was a Registered Nurse who became a patient, thus went to
the other side of the stretcher.

Another nurse actually made that statement to me 24 years ago when I had a procedure called a bronchoscopy which was done in the operating room. The nurse, who happened to be the nurse in the operating room said, “ive never been on the other side of the stretcher, so I cant honestly tell you how I would feel being in your shoes right now.”

I never forgot that and I when I actually became a patient with ME/CFS I referred to myself as being on the other side of the stretcher. That was 20 years ago this past January of 2014.

Before ME/cfs reached a level to where I was no longer able to work (yes I was one of those people thinking the “thing” would go away until I found out what “the thing” or mystery illness was), I was an active Registered Nurse over 9 years in NYC.

When I found out what the “thing” was about May of 1993, I was relieved.
I wasn’t fully schooled yet on the condition, but I was
relieved to finally have a “name” for what had been going
on for basically all of my life since early childhood.
I didn’t know what was ahead as far as being that person
on the other side of the “Stretcher”, until I officially
became a patient and was in the crash from hell in January of 1994.

My story actually goes way back to when I was very very young, 49 years ago, I was 11 months old.  There was an measles epidemic at my brothers school and my mom said that my brother “brought home the bug.” This happened a week before I was supposed to actually get the measles vaccine. It was then too late for the measles vaccine as I had the measles. Up until then I was healthy.

After the measles, I always had some type of cold, flu, bronchitis, high fevers, painful ear infections, and seizures. My mother said she even had a supply, sort of an emergency kit, which consisted of phenobarbital for the seizures and adrenaline/epinephrine for when my lips actually turned blue because of respiratory problems from the bronchitis.

My earliest memories when I was 3-4 0ld, were my mother actually screaming at the landlord, as we lived in a 3rd floor apartment in Brooklyn NY, when the heat was broken, “If anything happens to my daughter, I will kill you.” He did not kick us out after she did that, he fixed the heat very quickly each time.

Things were also a little different back in those days. Doctors did house calls, the doctor came to our home often.  The Doctor also said to my mom things such as,  “keep her inside until she gets better” and “let her sleep, don’t wake her up.” 

Today doctors don’t do house calls and they don’t say “keep her home until she is better,” they say something more like “she can go back to school or go outside to play after she is on the antibiotics 24 hours.” In other words, back in the days when I was a little girl, children were allowed to be sick, today they are not allowed to be sick or they aren’t given the proper time to recover.

I also did not start speaking when children normally do. My mother thought it was because there weren’t any children in the neighborhood for me to play with and that she had to find a nursery school so I would have other children to play with.  The real problem was, was that I was actually speech delayed because I was 3 1/2, close to 4 years old and I was still not speaking.

My mother found a teacher who was originally from Israel, who ran her own nursery school. My mother enrolled me in the nursery school.  It was that teacher who taught me how to speak.  My mother and father always talked about when I started talking. My parents said when I spoke, I spoke with the same Yiddish accent that the teacher at the nursery school had.  Instead of saying a word like “swing”, I pronounced it as “sving.” My parents got a kick out of that.

Between the ages of 4 and 5 years old, I had a kidney infection that was caused by a strep infection. I was very ill and the doctor told my mother to bring me to the hospital. I remember being in there a week. 

The strep infection that affected the kidneys was from strep infected tonsils that I repeatedly had. My mother stated it had gotten so bad, I had strep infected tonsils every 2 weeks, so the tonsils had to come out. I was 5 years old at the time.

I remember when my mother was preparing me to have the tonsilectomy.  She actually did a really good job because I remember skipping around saying “I’m getting my tonsils taken out” and being very excited about it.  I also remember  when she brought me to the surgical center where the tonsilectomy was done, I remember being on the operating room table before the surgery, I knew I had to count backwards, 5-4-3-2-1. I remember saying to the doctor “OK” when I started to count backwards. 

I still remember waking up in the recovery room after the surgery was done, and I remember my mom carrying me into the house when we got home.

After the tonsils were removed, I started getting better as far as my health. I didn’t get sick as much as I was getting sick between 1 and 5 years old. 

I was able to attend school but from Kindergarden all the way through High School, my mother had a hard time waking me up and getting me out of that bed. There was never a day that I wasn’t late for school.

I was sick more than the other kids in school and always had that on and off sore throat.  I took longer to heal as far as any type of cut or scratches. But I would always bounce back,  and was always able to attend school and was able to pass my classes.

There was one year in elementary school that I was probably absent about 1/2 of the year in total days.  I remember being sick repeatedly with some type of viral illness, 104 fevers, etc.. A couple of days before Christmas break, I remember my mother saying to me, there is 2 more days, why don’t you try to go to school those 2 days.  I remember being able to, and then the Christmas break started.

Another thing that I had trouble with during school, was that I could never focus on the textbooks, thus I never really read them. I was able to take good classroom notes. I passed all of the tests. I always thought, well, the other kids are probably smarter than me. I didn’t know back then, that I probably cognitive difficulties already.
The same thing held true when I was in college. I took excellent classroom notes and was very fast. I could actually transcribe almost every word the professors were saying during the lectures. I had the same problem with the textbooks, I had trouble focusing and became very tired when I tried to read for any length of time. So, I would highlight sections of the material that was covered in the lectures and work around the issue that way. What I had done seemed to work The good thing was, I made it through the Nursing program and became an RN, passed my nursing boards the first time around.

One thing I do remember from when I was that young, until I was older in High School, is that anytime I did get sick, my mother did not let me go out of the house until I was fully well. My mother also always let me sleep, never woke me up until I woke up. She did those things because that’s what the doctor said to do. What she actually did was keep me from becoming sick and disabled sooner.

What I didn’t know until later on in my life, was that my mother always thought something wasn’t right. The doctors never said anything was wrong, but my mother knew. The reason why she knew, was because I got sick more than the other children and that she had to keep me home until I was fully recovered and not just until the fever was gone and that I had to sleep many hours. My mom also didn’t tell me until later on, was that she knew she had the same thing wrong with her, she just didn’t know what it was.

I found work easier than college, I realized was sort of an audio-visual learner. I picked up the routine very quickly and did very well in my job.  On the days that I was off from work, I would tend to hang around the house in my pajamas, I was very tired. I felt that “thing” hanging around in the background from when I was a little girl. I rested most of my days off.

When I got married, it became more difficult.  The days that I worked, I was so tired when I got home from work, I went right to sleep. I didn’t cook dinner on those days.  I remember people at work talking about what they made for dinner the night before. If my co-workers asked me what I had made for my husband for dinner the night before, I was so embarrassed to say that I was tired and went to sleep, I would say that I made some type of dinner.  The “thing” was hanging around in the background, still didn’t know what it was, but knew I had to rest when I was tired.

I also realized, I needed to work closer to home and work hours that were more regular.  I did just that, I changed jobs, from a hospital in Manhatten to a hospital closer to home in Staten Island. I also changed my specialty from CCU to the Operating Room. The Operating Room was open Monday to Friday, closed on weekends and holidays except for on call.  On call was usually once a month.  I was still tired on my days off, but felt a bit of a difference because I was no longer working a 12 hour night shift.  The “thing” was hanging around in the background, but as long as I kept a regular schedule and ate regular meals I did ok. I still didn’t enquire about what that “thing” could be.

I remember it was 1988 and my husband said to me, you get sick more than I do and I heal faster than you do. I said to my husband, don’t worry, one day we will find out what my “mystery illness” is, not realizing that 5 years later we would actually find what that mystery illness was.

In 1990, I gave birth to twins, my daughter and son.  It was a rough pregnancy, I was in the hospital 10 weeks before the delivery, in and out of pre-term labor. I was also not allowed to get out of the hospital bed. I was on full hospital bed rest.  I always wondered if that long hospital stay on full bed rest was a preparation for what was ahead of me not even 5 years later.

A twin pregnancy is considered a high risk pregnancy as 50% are born early.  This pregnancy was the toughest that my ob-gyn doctors had ever seen.  Things happened during the pregnancy that they could not understand including becoming so anemic at one point, they gave me paperwork for family members to fill out in case I needed a blood transfusion, so family members could donate blood. They did that because they said I delivered at that point, they would have to transfuse me because they already knew I was going to be delivering via C-section.

I remember during the anemia problem, I said to my doctor, well im usually tired all of the time everyday. I also said that I thought I always had an iron deficiency.  My doctor said to me, you don’t have iron deficiency anemia, they knew that because they did a extensive work up to see what was causing my CBC numbers, particularly the H&H to drop so low. 

I started thinking about that “thing” that had always been hanging around.  I knew it had something to do with that, but didn’t know how to explain it to the doctors. Since I was a nurse, it was embarrassing to even say that because I still had no idea what the “thing” or “mystery illness” was.

I was also very dehydrated all of the time.  When I first went into the hospital for pre-term labor, I had 2 IV’s, one in each arm, they were infusing each of them 200 cc’s per hour via iv pumps for 3 days.  I was also so thirsty all of the time while I was in there, instead of calling the nurses all of the time to refill my pitcher with water, my husband brought me a 5 gallon container so I would have plenty of water to drink and not have to bother the nurses.  The nurses were so kind, every morning they took my 5 gallon container to the ice machine, filled it up with ice, and then filled it up with water. 

Even though I was drinking all of that water, when I slept at night and then woke up in the morning, I was so dehydrated that my urine was almost brown.  One day the one of the nurses became very alarmed, I told her that happened every morning, and once I started drinking water again, the urine would turn back to a normal color.  The nurses were also seeing things they had never seen before.

The day my twins were born, they were 35 weeks, 5 days and both of them were over 6 pound.  Everyone was so relieved!  They as in all of the staff and my doctors sort of let their hair down and said that they didn’t expect me to walk out of that hospital with my babies. They said my babies were miracle babies! 

Months later after I had the twins, I had went back to work. Maybe a month after I went back to work I woke and had trouble breathing. I then went to the emergency room, the doctors sent me for a chest x-ray, they said I had bronchitis.  They had given me a prescription for antibiotics, and sent me home.  I was home sick from work for about 10 days. I knew it had something to do with the “mystery illness” but still didn’t know what the “mystery illness” was.

The bronchitis came and went for 4 months. My co-workers were worried about me.  They kept saying to me that I didn’t give myself a chance to recover after the pregnancy. They told me later on that I had actually looked very bad as well during that time.

During the 4 months of these bronchitis episodes, the doctor couldn’t figure out what was wrong. He had ordered so many tests including a Cat Scan of my head and could not find an answer. Finally the doctor said, you may have a tumor in your lung that we cant see on the chest x-ray. When the doctor said that to me, my life flashed in front of my eyes, I was only 26 years old and I just had my twin babies months before.  I actually started wondering if I was going to die because I had become so ill.

The doctor also told me that I had an anxiety problem and was probably depressed. I felt so lousy, I believed the doctor and went to a psychiatrist.  That particular psychiatrist was also board certified in Internal medicine and was skeptical of what the doctor was actually telling me.

The doctor admitted me to the hospital during the 4th month of the bronchitis episodes.  He said that I needed to have a bronchoscopy to see if I had that tumor that we couldn’t see on the chest x-ray.  I was in the hospital 2 weeks on IV antibiotics, because the doctor said  I had mycoplasma pneumonia. While I was there, I realized I was on a floor where all of the cancer patients were. The cancer patients were either getting chemotherapy of they were being sent home to die including the woman that was in the other bed in the hospital room that I was in.

During the 2nd week of the hospital stay, I went to the operating room for that bronchoscopy to see if there was a tumor in one of my lungs. The good news was, there was not a tumor in one of my lungs, and the biopsy that the doctor did, of a supposed polyp, was negative.  At the end of the 2 weeks, I was discharged to go home and I was so happy to see my babies and be back home.

End of November-Beginning of December 1990:
When I went back to the psychiatrist, the psychiatrist said he thought I needed a 2nd opinion.  When I saw I saw the psychiatrist again, he said that he wanted me to go for that 2nd opinion because he said that I shouldn’t of still been on the prednisone that the other doctor had prescribed. The psychiatrist said that it was normal to have a certain amount of bronchospasm after the pneumonia, that that I probably did not need it anymore.  The psychiatrist also did not believe that I had asthma that the other doctor said I had.  The psychiatrist handed me the business card of the pulmonary specialist that he wanted me  get the second opinion from.

I went home and told my husband about the 2nd opinion. He said it was a good idea because he didn’t think the doctor who had been treating me knew what he was doing. I then made the appointment for the 2nd opinion.

At this time which was the beginning of December 1990, I went to speak to the nursing director at my job. The nursing director told me that she was going to give me an extended maternity leave and to not to come back until I was fully recovered.  She too thought that I did not give myself a chance to recover from the twin pregnancy.

I then went to see the doctor for the 2nd opinion, a pulmonary specialist, my husband came with me.  I told the doctor everything that had happened. While I was there, I had a chest x-ray, pulmonary function test and blood work.  The doctor had gotten his copy of the PDR.  He looked up Prozac since that was the antidepressant that the psychiatrist had prescribed to me.  Prozac was still a new drug, was only on the market about 3 years at that time.  The doctor stated that he didn’t know much about Prozac at that time, he then pointed out that a side effect of Prozac was Asthma, Bronchitis and Pneumonia, that maybe I needed to cut the dose.  I also signed paperwork for the hospital to release the records so this doctor could see the records from the 2 weeks that I was in the hospital. Before my husband and I left, the doctor stated that he didn’t think I had asthma.

I went back to the psychiatrist and he was very happy and relieved for me as he did not think I had asthma either.  We then cut the Prozac dose to 1/2 of what the dose was.

I think it was about 2 weeks later, that my husband and I went back to that doctor as he just received the records from the hospital.  When we got there, the doctor had the chest x-ray films from the hospital and said that I did not have pneumonia, and that I did not have asthma, that he could not tell me what I had, but I didn’t have pneumonia.  He also didn’t see any type of polyp on the chest x-ray that the other doctor said he had biopsied. He stated that I did not need to be on the prednisone anymore, and that I should start tapering off the drug.

Not long after getting this information, the psychiatrist said that I was not depressed and I could stop taking the Prozac.  The psychiatrist said that they would always be there in case I actually did need them.  I was so happy, I said thank you so much, I gave him a big hug.

I stayed home a few more months to recover from the “mystery illness” as I still did not know what this illness was.  When I did go back to work, I went back to work 2 days a week and no more than that, as I had my twin babies at home and it also gave me a chance to rest between the 2 days. I also thought that maybe I was actually beating what that “mystery illness” was, but at that time, I still did not know what that illness was, that was the Spring of 1991.

My baby, who is my younger son was a surprise, we didn’t exactly plan him.  My husband insisted on taking me away for a week to get away thinking I would get a little more of a break, relax and maybe help with my recovery of what we didn’t know I was recovering from at that time except what was probably that “mystery illness.”  When we came back from the vacation, a few weeks later we found out another baby was on the way.  My husband was actually disappointed that it wasn’t another set of twins believe it or not.  This was the summer of 1991.

 This pregnancy was uneventful compared to the last pregnancy.  I had a few episodes of pre-term contractions that sent me to the L&D, those were caused by dehydration and urinary tract infections, which the doctors administered IV fluids and gave me antibiotics.  Otherwise the “tiredness” you “never knew” that you are supposed to feel during a pregnancy, I did not feel with this pregnancy.  I did very well, I rested on my days off from work, took naps when my twins napped, otherwise felt fine.

My OB/GYN doctors were getting nervous around the 7th month and kept asking me when was I going to stop working and take maternity leave.  They must’ve been suffering a bit of PTSD from my last pregnancy :).  I finally said ok, I will take maternity leave if it makes you feel better :).  This was which was sometime during the month of January 2002, I think around the 3rd week. 

Unfortunately right after I started that maternity leave, my father in law passed away the end of January 1992.  My father in law had a stroke during surgery the summer before and he never recovered. My son was due in less than 2 months at that point.  During that week of the funeral, my husband and I helped his mother, cooking, serve coffee and cake to the family members who visited in the evening, etc…  I pushed a little too much that week.  I felt “the thing” or “mystery illness” kicking in,  it kicked into a flu, upper respiratory infection and laryngitis the week after the funeral.  My OB doctors ordered antibiotics. I thought oh, no, this cant be happening, my son is due in 6 weeks, I can not have this and deliver a baby too, this will not be good.  The scare lasted 3 weeks, then I was recovered.  I was very relieved.  This was the end of February 1992.

It was the 2nd week of March 1992, I went to my OB/GYN doctor for my appointment which was weekly at that point for the last month.  There was a 2 week discrepancy with the due date so my doctor sent me for an ultrasound to see where I was and to see if we were going to try to go ahead an let me try to deliver via v-bac delivery or schedule a C-section because according to the current calculations, I was 41 weeks gestation.  I then went to the OB specialist for the ultrasound appointment to find out what the gestational age of the baby was.  The first thing the specialist said was, you are almost 39 weeks (actually 2 weeks sooner according to the current calculation, and also my correct calculations) ,”that baby has a big abdomen, 10 lbs plus or minus 1/2 of a pound, your not planning v-bac are you?”  I said, oh yes I am!  He said, “oh no, no v-bac for you, you will be having a c-section.”  I thought, well, my doctors will let me try, they are v-bac advocates….yeah right! 

Of course I was in denial.  When I went to see my OB/GYN for my appointment, she said go the hospital tomorrow for your blood work, you are scheduled for a C-section the next day.  I said oh no, she said oh yes, his shoulders are too wide, he will get stuck and we will have to do a C-section anyway.  I cried like a baby, but I got over it, went to the hospital for my testing and packed my bag for the hospital.

March 19th, 1992, my son was born! There was a snow storm and we drove through a foot of snow to get to the hospital for my son to be born.  The specialist who did that ultrasound the week before was pretty much on the money with that weight calculation.  He was 9 pounds, 11 ounces! Everything went text-book perfect, that day could not have went better!  The nurses knew me because of the last pregnancy where spent 2 1/2 months in the hospital, they picked a nice room for me.  The labor and delivery nurses knew me, they were excited to see me and finished the last minute preparations before I was brought into the L&D operating room. My doctors picked the best anesthesiologist who did an awesome job with the epidural anesthesia, the epidural lasted 12 hours. After I was in the recovery room, they wheeled me into the nursery on the stretcher so I could hold my baby, then they brought me to my room.  It was a wonderful day.  It was also an almost birthday present for my husband as his birthday was 2 days later :).

This time around, I stayed home for 6 months before I tried to work again.  I stayed home, gave myself a chance to recover, enjoyed my new baby, and spent time with my twins.

Spring of 1993- Still no name for the “Mystery Illness” or “The Thing.” At this point, I had changed jobs from the Operating Room 2 days a week, where I was on my feet the whole day those 2 days to Cardiac Rehab, where I was able to sit at a desk, much easier. I also found a per-diem job at a same day surgery center, and would work there 1 day maybe over other week depending on how I felt. I had changed jobs because I could not commit to the 2 same days a week in the Operating Room.  I also had another baby who was a surprise.

There was another nurse at the Cardiac Rehab that had the same symptoms as I did. We talked about them every time I saw her.  We would bring in magazine articles to show each other regarding the symptoms. We were wondering if it was that “Epstein Barr” thing that Cher had.  Cher had been on tv 5 years previously where she about her “Epstein Barr” illness that a doctor had found when she had a physical before she was going to be filmed in a movie.  We then saw that the “Epstein Barr” illness was being called Chronic Fatigue Syndrome.

So one day I said to the other nurse who I worked with at the Cardiac Rehab/my co-worker, I will go to my family doctor, tell him I think I have it and see what happens.  That is what I did.  The family doctor ordered blood work.  When I went back to the family doctor he said I had elevated active Epstein Barr titers, that I probably had the illness.

My family doctor said he didn’t treat the illness, but he gave some suggestions according to what he knew.  He said if I needed to sleep 14 hours, sleep 14 hours. Take vitamins, make sure I ate properly.  He asked me if I exercised. I said yes. He then asked me where my exercise machines were. I said they were in the basement. He said make sure the windows are opened when you are using those exercise machines because you need to get oxygen to your brain, that people with this illness don’t get enough oxygen in their brain. If you notice, he did not know about the exercise issue, which IS the problem with this illness.

When I went back to work after this doctor appointment and told my co-worker about it, we were sort of excited, she figured that she sort of got diagnosed too.  Every time we saw each other, we would talk about our vitamins, I think I remember that we even went to the health food store together.

At this point, when I had a flare-up of this illness, it would last 3 weeks. During those 3 weeks, I had to stay home from my one or 2 days a week from my Cardiac Rehab job.  If I had known what was coming ahead of me 8 months later, I would’ve modified my lifestyle even more. I still wasn’t educated regarding the exercise or “over exertion” which included how much I worked, because the literature wasn’t out there.  The only literature I saw, was that when you were tired, then you should take a nap.

There was a key item missing out of the literature, and that was exercise, aerobic exercise, as in NO aerobic exercise, graded type exercise, and exertion.  These missing items were and are a still huge huge problem that is the main disabling factor of this illness today.  I knew about the over exertion from my personal experience, when I over-did it, I got sicker, but I didn’t know that was a missing item in the literature or anything I could find about the condition at that point.  There was not any information about a symptom I had never even heard of at the time, and that symptom was called “Post Exertional Malaise.” 

End of 1993, at this point, I had 2-3 week crashes/relapses and I was dragging myself to work. My kids and I all got the “flu” and respiratory infections.  I went to an internist, I figured the internist would know a little bit more about how to treat me.  When I told the internist I had Chronic Fatigue Syndrome, he asked me when I was diagnosed with that and did blood work, gave me a prescription for antibiotics.  When I followed up with the internist the next week, he confirmed via my labs that I had active and elevated Epstein Barr titers.  I asked what kind of treatment is there for this.  He said there is none, that I would have to rest until I felt better.  I thought oh my, how long am I supposed to rest, this thing felt like it was not going away at this point.

January of 1994, 2nd week, I was still not feeling well, thought I would bounce back as I had previously.  I decided to work the day I was on the schedule to work at the same day surgery center I worked in one day every other week or when I felt well enough to work there.  The day I was scheduled to  frost the car to get to work. It took over an hour to get there.  Everyone was late including the patients, so it all worked out.  At this point I was also bringing my lunch with me to make sure I was eating properly. 

When it came time to drive home, the roads were a mess and the highway was a mess because of the ice storm, I had to drive slow.  While I was driving, it was time to take the anti-biotic that I was still taking that was ordered by the internist for the respiratory infection. As soon as I took that antibiotic, I felt like I was on fire, I looked in the rear-view mirror, I was actually red as a lobster. I thought oh no, im having an allergic reaction to that antibiotic. I was driving on the highway when this was happening. I opened up the window as I felt a bit short of breath and was actually leaning my head out of the window.  I thought, I need to find a pharmacy that is opened because when I looked in my purse I saw that I did not have my Benadryl with me as I usually did because I started experiencing allergic reactions since the previous year.

I got off at the next exit, drove one blog and there was a pharmacy. I went in to the pharmacy, right to the counter and asked the pharmacist where the Benadryl was, that I was having an allergic reaction.  The pharmacist handed me the Benadryl, and I took it right there before I paid for it.  I then got back into the car, figured I could make it home, but  I kept feeling like I was getting “hotter.”  I thought, nope, this allergic reaction isn’t going away.

I was near the last exit in Brooklyn before the exit to the Verrazano Bridge.  There was a hospital right off of that last exit. So I got off of the exit, parked the car, went into the emergency room.  There was a man standing there, he said sign this, and the will call you when they get to your name. I thought, what is that man crazy?!?!

An emergency room nurse then walked by I said im having an allergic reaction, she took a look at me and took me right in.  They gave me an injection of epinephrine and watched me for a while.  It always feels like you are in those places forever, I really don’t know how long I was in there. I do know when the nurse let me leave, it was still light outside and this was in the month of January.  So it had to be before 5:30 pm I would think.

It didn’t take long, I was 1/2 way across the Verrazano Bridge, which is about a 2-2 1/2 mile span, and I felt the fire again. I looked in that rear view mirror and I was red as a lobster again. I thought well, I cant turn around here, I have to keep going, and hope for the best.

I did make it home ok.  I was red as a lobster until 11 pm that night.  I was devastated.  I thought, this illness is here to stay and I am never going to get better.  A good friend of mine, who is also a nurse, whom I was talking to on the phone that night, I said, no on  knows how to treat me, this is awful.  she said let me make some phone calls, I will see what I can find as far as help.

30 minutes later, my friend gave me 3 phone numbers and one of the phone numbers were Dr. Susan Levine. I did have Dr. Levine’s phone number.  I had a copy of the Manhatten yellow pages. She was the only infectious disease doctor in the yellow pages at that time who treated “CFS” or “CFIDS”, I didn’t know she was a reknown doctor or a researcher doctor yet.

The next day I called Dr. Levine’s office and she actually answered the phone, she had an appointment opening the next week. I thought oh wow, how awesome is that, I do not have to wait for months. My first appointment was January 31st, 1994.

Then the treatment began!

The thing about the treatment…….The insurance paid at first, but then it didn’t.  The meds that made a difference were “off-label”, meaning, they were not approved by the FDA and you had to pay cash if you wanted them.

20 years later…..Those meds are still off-label.

None of those meds and the other experimental immune modulator Ampligen have been approved. I thought by now they would be approved. I thought 10 years ago all of these meds would be approved…..

Not one…..

None….

It was the 10 year mark and $250,ooo later….no more money for off-label drugs and that was 2004.

Its 2014…..we still do not have those meds.

We have some things the insurance pays for, but not those. The immune modulators and immune globulin are what decreases or inactivates those viral titers and helps us as far as functionality, decrease of the crash time, and less to no infections.

Its 2014 and we still wait!

How much longer?

I don’t know, it doesn’t look like we are even close yet.

Nothing has changed 😦

 

 

My blog was part of the #May12BlogBomb hosted by Sally “Just ME”.

You can click HERE to check out some of the other blogs who are also participating in the #May12BlogBomb for ME awareness day!

Thankyou for stopping by and please spread the word for

May 12th ME Awareness Day!

 

 

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

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

 

Continue reading


Do No Harm!

Welcome!

I am a nurse turned patient. It’s been 19 years since I jumped on the other side of the stretcher and became a patient, and let me tell you, this has been a long ride.

Not only did I jump onto the other side of the stretcher, but I jumped on the other side of the stretcher with one of the “misunderstood” illnesses.

I will talk about me in a later post.

But first, I have to talk about what is on my mind today.

Lately, I have been observing some of the most unethical things going on in the medical community. The psychiatric field or lobby has not only been trying to turn illnesses into a “psychiatric phenomena,” but have been quite intrusive about it.

At one time, psychiatrists were on the low end of the pay scale. Psychiatry was not a very “prestigious” field in medicine as well.
Not anymore, the “psychs” have outsmart the system and they are making a lot of money from the pharmaceutical companies doing so.

Who are the victims of this?

Patients with misunderstood illnesses, both adults and pediatric.

There are patients who can not go to an emergency room without suffering some type of abuse by the staff, or they leave in worse shape than when they went in there.

Why is that?

Because there are practitioners in those emergency rooms who will actually tell the patients, “Your illness does not exist” with no regards or respect of the practitioner who gave the patient the original diagnosis.

When I worked in the field, I never saw such disrespect and unprofessionalism. Its an absolute disgrace.

The parents of children! This is the worse! This stuns me, I cant believe what I am seeing.

There have been cases in the media these days of where children, suffering from a misunderstood illness, treated for years by a physician who specializes in the condition, with medical records to verify this, all of a sudden have to go to the emergency room.
Then, what happens when they go to the emergency room is, the parents will not only be told there is “no such thing as that illness,” that the child actually has a “psychological” problem. If the parents don’t agree, the hospital will accuse the parents of medical child abuse, call DCF, and take the child away if the parents do not agree to the “new” plan of care.

I never saw anything like this when I worked in the profession.

This is an absolute, unethical, disgrace!

Parent’s who have chronically ill children are very emotional, and rightfully so. These parents are desperate to get the child the help the child needs to get them well and if something goes wrong. This is not abuse, it would be neglect if they didn’t do this.

This has become beyond an over-kill.

True “Munchausens” and “Munchausens by proxy” are very pathological and calculating, and they don’t typically argue with the staff. They will agree with whatever medical intervention the doctors plan to do, just to get that intervention. Munchausen’s and By Proxy takes much observation to actually prove, it is not an over night diagnosis. It is actually on the rare side, not the over-kill its being portrayed as today.

A person who suffers from “Munchausen’s” are so calculating, they can actually pull off having a cancer diagnosis and get the chemotherapy. That situation actually almost happened where a friend of mine worked. Before treatment was started on that person, the hospitals in the area received an alert via fax, the doctors received the alert, approached the person, and asked the person to leave, which the person did and very quick I might add. You maybe saw one of those people in a career.

When I worked in the field, you never heard of the words “somatoform disorder,” somatic symptom disorder,” etc…

I personally, have never saw anyone ever diagnosed with somatoform disorder, the term wasn’t even used, or even hypochondriasis. Patients do not have symptoms for no reason. Doctors did their jobs and found out what was wrong with the patients!

There was none of this “medically unknown symptoms’ nonsense. If you think about it, that could be applied to anyone with any disease because the causes of most diseases are unknown.

Somatoform disorder is the biggest deceptive farce out there today!
It amazes me, that people with medical school level IQ’s, who actually complete medical school, are blinded by that. There are medical schools teaching these students not only to be lazy, incompetent practitioners, they are actually teaching them how to get sued.

The use of the term “Somatoform disorder” is a very dangerous practice.

I read about one article a week of someone dying of an undiagnosed cancer because the patient was told “it was all in their head” or that they were depressed. Someone told me not to long ago that it took her 10 years to get an M.S. diagnosis, that for 10 years, she was told it “was all in her head.”

I also take a look at the nursing forums once in a while and this is a big topic of conversation. I have seen nurses say that a patient of theirs was diagnosed with “Somatoform disorder”, then die 4 days later of a perforated bowel.

These things are an absolute outrage!

What has happened to the medical profession!

Patients should not be going through this!

Psychiatrists need to stick with psychiatric patients that need their care, there are plenty of those patients out there.

Psychiatric MD’s or other MD’s who are guilty of this intrusive and unethical practice of telling a patient with a “misunderstood” chronic illness, because they never heard of the illness or have no idea what it is, need to learn to say, “I don’t know what is wrong,” refer the patient to a doctor who does know, or to another doctor period, and not tell those patients that they are “depressed”, “crazy,” its all in your head,” or “you have a somatoform disorder.” It is abuse to do that and it harms patients!

I tell fellow patients who go through that, take advantage of those online reviews and put feedback, because by doing that, they could be saving another patient life!

I believe if practitioners were reminded to “Do No Harm,” they would start thinking twice about what they are diagnosing and how they are treating these patients!

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