Tag Archives: NIH Pathways to Prevention

“GET” And The House Of Commons Gym Part 4

 

 


Graded Exercise Therapy and The House Of Commons Gym

Part 4

In Memory Of M.E. Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

 

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

 

From The Nurse Point of View! 

I will point out again like I said in my previous blog posts, i’m coming from an R.N. point of view for the benefit of the patients because I was an active R.N. until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject, and I would end up sounding more like an angry patient than a nurse who is very disappointed because of the lack of the standard of patient care in regards to this illness.

 

Review Of The Facts!

According to Malcolm Hooper’s “Magical Medicine: How To Make A Disease Disappear:”

 

“On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar:

Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. -Brynmor John

He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength.

He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS.

Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.”

.

Let’s Assess!

Brynmor John could no longer walk on that slight gradient from his house to the main road,  as he stated

“I could just not get up it.”


Prior to becoming ill Brynmor John was able walk up that gradient, otherwise he wouldn’t of made that statement.

Brynmor John was to weak to put his clothes on and  he could no longer tolerate exertion.

Brynmor John also suffered the abnormal recovery time to the slightest exertion. as “it took days to regain his strength.”

Prior to becoming ill, Brynmor John did not have a problem dressing before he became ill nor did the slightest exertion exhaust him, otherwise that would not have been noted as well.

Remember, Brynmor John was only 54 years old.  A healthy 54 year old man or woman would not have a problem walking up a slight gradient, would not have a problem dressing,  nor have a problem tolerating exertion.

“Abnormal Recovery Time” is expected as we know in patients with M.E. after exertion.


Abnormal Recovery Time

Abnormal recovery time was already a known symptom of M.E. or Myalgic Encephalomyelitis in 1988.

The 1986 Ramsay Definition for Myalgic Encephalomyelitis Compliments of NAME-US.org Stated:


“Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.”


Brynmor John was suffering other symptoms in addition to the abnormal recovery time!

 

“Not A ‘Seasoned Veteran'”

Malcolm Hooper’s

Magical Medicine: How To Make A Disease Disappear stated that Brynmor John

was trying to ensure better understanding of ME/CFS,” 

which meant he was a newer patient.

Brynmor John was not a “seasoned veteran” as far as being an M.E. patient, Brynmor John was still trying to learn about the illness.

Since Brynmor John was not a “seasoned veteran” of M.E.,  Brynmor John would not of known if the additional symptoms he was suffering were additional complications.


A Closer Look:

I did a search and I found where Brynmor John lived so we could take a look at the property where he lived and the gradient that he stated he could no longer walk up on the way to the Main Rd.

Brynmor John’s actual home address was:  Yale Haven, Station Rd, Church Station, Pontypridd, Rhonnda Cynon Taff, CF38 1AF, U.K. compliments of Welsh Biography Online and Google Maps

Yale Haven is the name of Brynmor John’s house.  Many houses in England have names instead of being noted as a number in a street address.


Google Map of the area:  

The map shows “Yale Haven” which was Brynmor John’s house.
Just north of Yale Haven is  Main Rd.  Station Rd is on the left of Yale Haven.

BrynmorJohnHouseMap


Google Maps Street View:

This is the Station Rd view of Brynmor John’s property which is in back of the trees on the right.

 YaleHavenStationRoadView

 


Google Maps Street View of “Yale Haven”:

Yale Haven, which was Brynmor John’s house is on the right. The Main Rd is on the left.

BrynmorJohnHouse_02

 

The gradient Brynmor John was talking about is on the right side of the house where the driveway is that leads to the street to the Main Rd. 

As you can see, that is a not a long walk.

A person with Mild or Moderate ME could walk that short walk and suffer their post activity exacerbation of symptoms after the fact.

Brynmor John’s symptoms he was experiencing in addition to the abnormal recovery time was different, Brynmor John stated:


“‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’

Brynmor John could no longer walk up that slight gradient at all!

Brynmor John was 54 years old.  If  Brynmor John was a healthy person, he should not have had a problem walking on that gradient.  The gradient is not a steep gradient.

Up until Brynmor John became an M.E. patient he was able walk up that actual gradient to the main road, if he could not walk up that gradient going to the Main Road,  Brynmor John would not have made the statement:


I just could not get up it!”


Brynmor John should not have had a problem continuing to walk on the property where he lived if the exercise prescription was the proper recommendation.


Was Something Missed?

Brynmor John was advised by his doctor to “Exercise his way back to fitness” as stated in “Magical Medicine: How To Make A Disease Disappear.”

Brynmor John had listened to his doctors advice and attempted to “exercise his way back to fitness” as his doctor advised.

Instead of becoming “Fit,” Brynmor John not only suffered the increase in his abnormal recovery time, he became so weak that he could not dress, he could not tolerate exertion, and he could not walk up the gradient to the Main Road from his house.

We also see no further documentation as far as Brynmor John’s doctor investigating further as to why Brynmor John’s condition was not improving and why Brynmor John could not walk up that gradient.

Brynmor John was still exercising at the House of Commons Gym because he was exercising right before he died, December 15th, 1988.

Brynmor John was also still working as of December 5th which was the day of his last noted contribution to UK Parliament regarding “Environmental Problems.”

Brynmor John was still both working and exercising.

Brynmor John did not improve.

Not only did Brynmor John not improve, Brynmor John suffered the worse complication that one could suffer, Brynmor John went into Cardiac Arrest immediately after he was exercising while exiting the House of Commons Gym.

 

Why did Brynmor John’s doctor not listen?

Malcolm Hooper’s Magical Medicine: How To Make An Illness Disappear” stated that Brynmor John:

“was irritated by the profusion of psychiatric comment.”

The “profusion of psychiatric comment“that Brynmor John was talking about was the intrusion of the “psychiatric lobby” which was led by Professor Simon Wessely and his colleagues known as the “Wessely School.”

The school of thought of  the “profusion of psychiatric comment” or “Wessely School” believes that M.E. is a myth, a psychiatric disorder, or what Professor Wessely believes to be “functional somatic syndrome” or behavioral disorder where the patient has medically unexplained fatigue caused by inappropriate illness beliefs.

Thus, Brynmor John’s doctor did not “hear” Brynmor John’s complaint of symptoms because Brynmor John’s doctor was of the school of the “profusion of psychiatric comment“, better known as the belief of the Wessely School definition of “CFS/ME” which is what the Wessely School classify M.E. as.

The “profusion of psychiatric comment” or “Wessely School” belief for the treatment of “CFS/ME” is psychiatric and their treatment for “CFS/ME” is what is called “CBT” or Cognitive Behavioral Therapy and
“GET” or Graded Exercise Therapy.

The “Wessely School” belief for the treatment of Cognitive Behavioral Therapy is to “cure” the “dysfunctional beliefs” of patients who only “think” they have a non-existent illness called “ME”,

The “Wessely School” belief for the treatment of “GET” or Graded Exercise Therapy was to reverse the change that resulted in deconditioning in patients who avoided activity because the patients had a false belief of illness.

 


A Few More Clues!

 

All of the M.E. patients who are reading this, what do some of our lab results show?

If you know the different items in the lab results,  which of those items can affect the heart?

What can those items do to the heart?

Can you think of another M.E. patient who died of Sudden Cardiac death because that patient wasn’t examined further?

If you know who that M.E. patient is who I am referring to, what was wrong with that M.E. patients heart?

 

 

If you can identify what is being described and asked in the questions above:

-Should Brynmor John’s doctor continued to have allowed Brynmor John to keep exercising “his way back to fitness?”

-Should Brynmor John’s doctor have possibly known what the problem was according to Brynmor John’s symptoms and discontinued  Brynmor John’s exercise prescription to investigate further to confirm?

 

What did Brynmor John’s doctor miss that caused Brynmor John to suffer sudden cardiac death after he exercised in the House of Commons Gym?

??????????

 

Fellow Patients And Others:

If you think you know the answer, please leave it in the comments.

If we the patients are to be effective advocates for this illness,  the complications must be pointed out, not just the symptoms that make this illness unique in comparison to other illnesses.

The discussion should not be “Do M.E. or “CFS” patients die”, the discussion should be, what are the specific complications that M.E. or “CFS” patients die from and why do those complications occur!

I included “CFS” because patients are diagnosed “CFS” or “ME/CFS”  here in the United States.

There is no need to dance around the truth about this and other complications!

M.E. patients have serious and potentially lethal complications and they must be pointed out!

As the complications are discussed,  this information will circulate via the internet and social media that we didn’t have 25 years ago where we could not do that.

Because we as patients could not do that 25 years ago, this illness has gone from the infectious disease department to the psychological propaganda department.

Brynmor John died in 1988 the other patient I pointed about above died 16 years later  because of the same thing which was missed causing Sudden Cardiac Death that I did not state yet.

Do you think Brynmor John and the patient who died 16 years later have been the only two patients who died of  Sudden Cardiac Death because something major was missed because of something that could’ve been very easy to diagnose?

 

Yes, I say “EASY TO DIAGNOSE,” and I shake my head because I was an active R.N. and I knew this and I cant believe that there are many physicians today who do NOT know this!

BeNiceToNurses

 

To Be Continued……..


The whole idea you can take a disease like this and exercise your way to health is foolishness, it is insane.”~Dr. Paul Cheney~

 

“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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“GET” and The House Of Commons Gym Part 3

 

   Graded Exercise Therapy and The House Of Commons Gym

Part 3

In Memory Of M.E. Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

 

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

 

From The Nurse Point of View

I will point out again like I have before, remember, I’m coming from an R.N. point of view for the benefit of the patients because I was an active R.N. until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject, and I would end up sounding more like an angry patient than a nurse who is very disappointed because of the lack of the standard of patient care in regards to this illness.

 

How Do the Readers Know that The Nurse Point of View For This Particular Blog Post They Are Reading Here  Is Actually Correct?

If you are reading this blog for the first time, I was actually an active Registered Nurse in New York City, before I became too ill with M.E. to no longer work. Those who know me, know that to be true.

One of my specialty areas was Cardiac. I worked in the Cardiac Care Unit of the medical center in New York City, which is featured in the YouTube video below of a current TV program. There are no actors in the video and everything filmed were actual events 2 years ago, while they were filming to make the program. This video would pretty much give you an idea of how busy any of the ICU’s was in that type of medical center, including the CCU where I worked.

I was also a Cardiac Rehab nurse in 2 different centers in New York City as well.

 


The hospital is New York Presbyterian Hospital (known as New York Hospital/Cornell Medical Center when I worked there), which has always been in the top 10 hospitals in the US for Cardiac Care and Surgery. You can read information about their Cardiology department here , so you can decide whether or not I actually know what I am talking about.

 

What actually happened to Brynmor John? 

Why did this not have to happen?

Why was the doctor recommendation or prescription wrong?

Why was this actually wrongful death and negligent malpractice?

On The Scene Cardiac Arrest Event

Before I answer those questions, which I will start to do in Part 4, I wanted to find a video on YouTube so you can see an actual demonstration on the scene of a cardiac arrest response from the emergency services.

In the entirety of this blog post, I feel that everyone must know the different aspects of Brynmor John’s case in order to understand the potentially lethal treatment recommendations that Brynmor John’s doctor prescribed him, which includes the scene from the Emergency Services video, so you can see why Brynmor John could not be successfully resuscitated. This is so everyone can see just how serious this unethical treatment protocol is.

It took a little while to find an older version of the video  below, because I want you to see what the realistic version for 1988 would be, which happens to be the year Brynmor John died.

The reason being is that the CPR protocol was different in 1988 than it is now. BCLS or Basic Cardiac Life Support is revised each year in order to increase the survival rate. If you happen to know what the current CPR protocol is, you can see that it is an older protocol or obviously slower than what the protocol is today.

I could not find a video old enough to show you one where the Emergency Services did not have a defibrillator, because the ambulances did not have defibrillators in London until 1990. I found that information here when I was researching to find when defibrillators were originally in the ambulances in England. The reason being is because Brynmor John as we know died December 13th 1988.

Before I show you the video, I have to explain why the defibrillator would be important!

 

Why would the defibrillator be important?

If you take a look at that link above about where I found when defibrillators were originally in the ambulances in London, you will read that most cardiac arrests occur outside of the hospital.
Professor Frank Pantridge who along with Dr. Geddes of the Royal Victoria Hospital of Belfast, who actually produced the first portable defibrillator in 1964, and who was referred to as “The Father Of Emergency Medicine” or “Grandfather of Prehospital ALS or Advanced Life Support” believed that “immediate correction of v-fib should be done at the scene of the event“, which we know to be true in the hospital as well.
ProfessorFrankPantridge

Professor Frank Pantridge

JAMES FRANCIS “FRANK” PANTRIDGE, MD, CBE
October 3,1916 – December 26,2004

 

What is V-Fib or V-Fib Arrest?

V-Fib is Ventricular Fibrillation, which is a lethal cardiac arrhythmia during cardiac arrest.  If you are not resuscitated from “V-fib” with a defibrillator, you will die.

Ventricular Fibrillation looks like this on the EKG:

VFib

 

A Normal EKG or what is called “Normal Sinus Rhythm” looks like this:

Normal Sinus Rhythm

 

When someone goes into Cardiac Arrest, every second makes a difference because oxygen is not getting to the brain via the pumping of the heart. You only have minutes to save the patient before brain death occurs. The longer you wait to do cardioversion or “shock” the patient with the defibrillator to shock the heart back into a normal sinus rhythm the chances of saving that patient are less to none.

Here is information from the American Heart Association About CPR. You never know, you may be the one who saves your loved ones life because you knew how to do CPR!

Video of an actual  On the Scene Cardiac Arrest Event:

 

This video was actually done in Chicago in 1994 by the Chicago Fire Department Emergency services, where they responded to a call for someone who was found unresponsive, in cardiac arrest.

As you know, you can see the timer on the bottom right of the video. It takes the EMS over a minute to get there. This was probably the case when the EMS responded to the scene where Brynmor John was or depending on how far away the EMS was from Brynmor John’s location, which was the House Of Commons Gym.

If you notice, one of the firemen is doing CPR, another is providing the airway or breathing for the patient, that bag he is holding is called an ambu-bag. Another fireman is charging the defibrillator which is the portable machine that have wires which are connected to those paddles he is holding that he is going to put on the man’s chest to try to defibrillate the patient. The EMS people who responded to the scene where Brynmor John was did NOT have a defibrillator because the year was 1988. Remember, ambulances in England did not have defibrillators until 1990.

DefibPatient

If you see the screen on the cardiac monitor, the black screen with the wavy line. You don’t see the “Normal Sinus Rhythm” that is in the EKG example above. The man didn’t respond.  The protocol is to shock the patient 3 times in a row.  It looks like the video was probably edited. You only see them shocking the patient one time, and then the video shows the cardiac monitor, which shows that the man didn’t respond. Sometime during that response, they did put an IV to give the patient emergency drugs.

Asystole

 

The flat or almost flat wavy line is called Asystole or complete cardiac standstill or arrest. That man did not respond. The EMS from the fire department put him in the ambulance to bring him to the hospital because the doctor in the emergency room would be the one to pronounce the patient deceased at that point.

 

Usually, when they remove the cardiac arrest patient from the ambulance, the emergency room doctors and nurses would’ve been out there waiting. They would be moving much quicker to get the patient inside to the emergency room if they were expecting to receive a patient, which they would’ve known ahead of time that responded to the Advance Cardiac Life Support, which was administered by the fire department emergency services.

As you can see in that video, there were no doctors and nurses waiting outside. They already knew ahead of time what the condition of the patient was because the EMS, which were the firemen in that video who radioed ahead to let the hospital know that they were bringing this man who would be “DOA” which means “Dead On Arrival.”

That man did not survive! 

The fireman was doing CPR while they were bringing the patient on the stretcher into the emergency room because he was not officially pronounced deceased if you are wondering why the fireman is doing that. Only the doctor can do that, so the fireman or paramedic has to keep doing CPR until the doctor pronounces that the patient is deceased.

DeathBrokenHeart

 
Compliments of Baseline Of Health Heart Foundation

 

What you just saw was the same type of scenario that happened to Brynmor John after he went into cardiac arrest, while he was walking through the doors of the House of Commons Gym to go home.

We know that Brynmor John didn’t make it like the man in the video did not make it.

Brynmor John died December 18th, 1988 after exercising in the House of Commons Gym as per his doctor recommendations or as prescribed by his doctor Malcolm Hooper stated in “Magical Medicine:”

 

“Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.”

 

WrongfulDeath5

To be continued in Part 4-> Click *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!

 

 


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!