Tag Archives: M.E. . Myalgic Encephalomyelitis

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


“GET” and The House Of Commons Gym Part 2

 

 

Graded Exercise Therapy and The House Of Commons Gym

Part 2

In Memory Of ME Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

 ]

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

 

What Really Happened To Brynmor John?

First we have to look at the situation!

 

According to Malcolm Hooper’s “Magical Medicine:”

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.

 

According to MedLibrary.Org and Wikipedia:

Brynmor Thomas John (18 April 1934 – 13 December 1988) was a British Labour politician.
John was Member of Parliament for Pontypridd in South Wales from 1970 until he died in 1988 at the age of 54. During the Labour government of 1974 to 1979, he was a junior Defence minister for the Royal Air Force (RAF) (1974–1976) and a Home Office minister (1976–1979).

The circumstances of his later life and premature death are cited by physicians postulating one school of thought concerning treatment of chronic fatigue syndrome. Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded medical advice: that sufferers may exercise their way toward a cure for the illness

 

Lets take a look at the House of Commons Gym 

These images were from different sources on google images including The Westminster Gym and Daily Mail Online UK.

As you can see, the House of Commons Gym is a big gym, a big fitness center, sort of like a Jack LaLane or an La Fitness which are here in the United States.   People are exercising on the machines….

The gym is actually called “The Westminster Gym” , the staff gym for members of Parliament.  Looks very nice, nice amenities.

HouseOfCommonGym_01

Membership includes access to 100 different gyms across London which include pools, group exercise classes, sauna.

HouseOfCommonsGym_02

They have strength machines and free weights!

HouseOfCommonsGym_03

A 40-Station Gym which includes steppers, rowers, cycles, cross trainers which include touch screen technology, a place to dock your ipod and your own person tv viewing screen. State of the art technology!

HouseOfCommonsGym_04
They have brand new “Trixter” bikes which are supposed to offer virtual reality cycling.

They offer classes too: Pilates, circuit training, yoga.

HouseOfCommonsGym_05

 

They even have personal trainers to help you achieve your goal!

Fitness Instructor Training from just £13.50 per 45mins. Not too bad, that’s a good price.  That must be a discounted price for members, personal trainers here in the US charge over $100 an hour.

Air Conditioned so you stay cool while exercising.

Opened Monday to Friday so the members can work out right next to where they work.

 

SomethingIsMissing

 

Something is missing……

They don’t offer something on that list!

Something is missing on that list……

Lets take a look at the pictures where the people are.

Something is missing in those pictures too.

I should say someone is missing in those pictures.

I don’t see a nurse

Do any of you see a nurse?

No nurse!

We do not see a nurse because this is NOT a medically supervised center!!!!!!

 

Malpractice1

 

 

Brynmor John Was Exercising In A Non-Medically Supervised Center!!!!!

I must focus and hold my composure, because my temperature is rising!

What is wrong with this scenario?

Why was this wrong?

Why should he not have been exercising there in the first place?

Why should he have NOT BEEN EXERCISING AT ALL???

This should NOT HAVE HAPPENED?

His physician was missing the item that is in the 2nd picture above this one!

 

Physician Misconduct

 

This was more than a big blunder by Brynmor John’s doctor!

 

To be continued………

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

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

 


“GET” and The House Of Commons Gym Part 1

 

Graded Exercise Therapy and The House Of Commons Gym

Part 1

In Memory Of ME Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

JOHN, BRYNMOR THOMAS (19341988), Labour politician. He was born on 18 April 1934, the son of William Henry John, a painter and decorator, and Sarah Jane John. He received his education at Wood Road elementary school, Treforest, Pontypridd Boys’ Grammar School and University College, London. He graduated Ll. B. (Hons.) in 1954. He was an articled clerk, 1954-57 and he became a solicitor in 1957. He was on National Service, 1958-60, serving as an officer with the education branch of the RAF. As a partner from 1960 to 1970 in the firm of Morgan, Bruce and Nicholas, Pontypridd, John specialised in industrial accident cases.

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

He had joined the Labour Party at the age of eighteen, and was secretary of the Labour Party at University College, London. He was active in the local Labour Party in Pontypridd. He was elected Labour MP for Pontypridd in the general election of 1970 as successor to Arthur Pearson and he continued to represent the constituency until his death. He had first come to prominence in his opposition to the visit of the Welsh hockey team to South Africa and he was a committed devolutionist. Brynmor John was Under-secretary of State for defence for the RAF, under Harold Wilson, March 1974—April 1976, and then Minister of State at the Home Office during the Callaghan government of April 1976—May 1979. He was regarded as a safe pair of hands who seldom ran into controversy. He served as chairman of the Welsh Labour Group, 1983—84. He was also opposition spokesman on Northern Ireland, 1979—80, defence, 1980—81, social services, 1981—83, and agriculture, 1984—87.

He was a fierce anti—unilaterist who stormed out of the Labour Party conference at Brighton in 1981 when chairman Alex Kitson refused to call him to speak. He was then quickly replaced in that shadow portfolio by John Silkin. Subsequently Brynmor John was not prominent in the party councils. He was named as a possible defector to the SDP in 1981, but deeply resented the insinuation, telling students at the Polytechnic of Wales that the actions of the SDP were designed to ensure the triumph of the hard left. He was also a bitter opponent of the Labour Party’s Militant infiltrators. He had backed Roy Hattersley in the 1983 Labour Party leadership contest, and was promptly sacked by Neil Kinnock from the shadow cabinet. During his last years he had thrown himself into his constituency work with renewed vigour. He was a grey—haired, bespectacled figure, somewhat lacking in charisma. But it was easy to underestimate him, and he had a witty felicity in debate.

He married on 6 August 1960 Anne Pryce Hughes, the daughter of David L. Hughes. They had one son and one daughter. They lived at ‘Yalehaven’, Church Village, near Pontypridd. His hobby was watching rugby football. He died on 13 December 1988 at St Thomas’s hospital, London after suffering a heart attack and was cremated at Glyntaff Crematorium. He was succeeded by Kim Howells MP.

~Compliments of Welsh Biography Online~

 

I never saw a proper tribute to this patient.

I felt it was long over-due.

The Question is , What REALLY  happened to Brynmor John?

To be continued…..

 

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

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

 


Hearsay Medicine

Hearsay

What is “Hearsay Medicine”?

Actually,

“Hearsay Medicine” is a Copyright of “The Side of The Stretcher,” aka Me :).  I figure I should do that because blogging isn’t like it was 10 years ago.  I notice the practice of “plagiarism” is not just common, it is rampant!  You must copyright every one your ideas!

If you are familiar with the term “Hearsay” which someone with a legal background would be familiar with, then you may have an idea what “Hearsay Medicine” could be.  If you don’t, read on and find out, because there are doctors who practice “Hearsay” medicine and one day you may be in a situation where you may just need to know this if you have a “politically incorrect” illness.

From the Nurse Point Of View!

As I have said in my previous blog posts, my blog posts are written  from an RN point of view for the benefit of the patients because I was an active RN until I was no longer able to work because of M.E.

I also could not 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 very disappointed because of the lack of the standard of patient care in regards to this illness.

I decided to do this when I finally saw something where I thought, ok, enough is enough, the medical people with this illness must speak up because this is absolutely ridiculous, this is negligent, not to mention harmful to the patients as has been unbelievably and ridiculously harmful as well as many other things through the years, that if we don’t speak up, this situation will go on another 20-30 years.

Because of the “controversial and political” situation that our illness is in. and what I and most of us have observed and had to go through the last 20-30 years, its time to make things right or at least get us moving in the right direction.

I cant say I never saw a “political” affected illness because HIV/AIDS was in that same situation in the beginning, but their situation didn’t drag on for 30 year as this situation.  I didn’t think I would see it again after how bad that epidemic actually was.

Also,

I too have encountered a “Hearsay Medicine” practitioner 9 years ago, who was very rude, who decided they were going to be rude when they saw the diagnosis that was written on my chart.  When that happened, I was shocked, I was stunned, I could not believe a doctor actually would do that and I really started to wonder if other doctors were doing this.  Thus, this post, “Hearsay Medicine” because I do not want to see other patients fall prey to this treatment which can be equated to nothing other than a classic case of bullying or abuse from an uninformed or uneducated medical practitioner who should know better.

Hearsay Medicine!

The term “Hearsay Medicine” was something that I thought of one day when I was thinking about when patients with M.E. or one of the other “controversial illnesses” go to the doctor for the first time to find out what is wrong, and they will hear  one of a number of different classic statements that “Hearsay Medicine” practitioners make today.

“Hearsay Medicine” practitioners usually make those statements because they either choose to not listen to the patients,  or they did not take the time to research the illness to find out what the illness really is and they believe many of the unreliable sources out there today and repeat what those unreliable sources say because they think those unreliable sources are correct.

Classic Statements 

Those of us with M.E. or who were giving the diagnosis of “CFS” and those other “politically incorrect” illnesses already know what those statements are, but for the other people reading that don’t know, we will educate you to what is going on regarding “Hearsay Medicine” if you or your family member become a victim to one of these “Hearsay Medicine” practitioners.

If its a doctor reading this, even better because there are doctors who need to be educated if they may have made one or more of these statements. As a matter of fact, this blog is addressing those health practitioners, so read on and see why they need to be educated and why this may be important for you to know!

1. “Its all in your head honey”

2. “You are suffering from depression?”

3. “You just need to get some exercise.”

4. “Did you try sitting outside?”

5. “Maybe you need a new hair color.”

6. “No, I don’t need to read that piece of paper, I know what your problem is.”

7.  “There is no such thing as that illness, that illness IS DEPRESSION.”

My Personal Encounter With A “Hearsay Medicine” Practitioner

This is a what a doctor actually said to me 9 years ago when I went to a local doctor because I was sick with bronchitis and I could not drive the one hour and 15 minutes to my doctor who usually treats me. When this person saw “ME/CFS” written on the chart, this person ignored the reason why I was there and decided to say these things instead.

“There is no such thing as Chronic Fatigue Syndrome”.

“Chronic Fatigue Syndrome is depression.”

“Who is your doctor?”

“Is your doctor an internist?”

“If your doctor is an internist, medicare is not going to pay me.”

“You should’ve went to my friend Dr. B. down the road at the urgent care center.”

“Who filled out your disability papers, how interesting that someone filled out disability papers.”

“You have fibromyalgia too?, I make my fibromyalgia patients exercise.”

Direct Questioning

The question I have for the doctor or anyone else that thinks that this is “all in the patients head” is, where did you learn that?

Who taught you that?

Did your medical school teach you that?

Where did you hear that information?

Are you referring to places such as the CDC toolkit, Wikipedia and other websites?

Do you say that because the group practice that employs you tells you to say that?

Are you afraid that your colleagues will harass you if investigate further?

Quite franky, what makes YOU think it is all in their head when it could just be all in YOUR head?

Possible Answers

-I went to Harvard Medical School.

 -Yes, my employer tells me to say that otherwise they will fire me

-My favorite professor in medical school said that and he co-authored a number of textbooks.

-I read it on that site called Kevin MD

-I referred to the CDC toolkit for the information.

-I didn’t think to look anywhere else because the CDC is usually the place I look because the CDC is always where I look.

-I  looked on Wikipedia

-My best friend I went to medical school with who is a psychiatrist told me.

-I looked at The Mayo Clinic website

-I took a CE (continuing education) course and that’s what the CE course  taught.

-I read it in the newspaper.

-I heard it on TV.

OBJECTION HEARSAY!

As the lawyer may say in the courtroom if you actually gave that type of answer!

Why “Objection Hearsay?”

BECAUSE:

If YOU were in the courtroom “Hearsay evidence” is normally excluded from a trial because it is deemed UNTRUSTWORTHY.

BECAUSE:

YOU listen to whatever someone tells YOU.

AND,

YOU believe everything you read without double checking or investigating further,

THEN,

YOU start preaching the same thing!

THE TRUTH IS,

YOU are practicing “Hearsay Medicine” which is a dangerous practice my friend!

GUILTY AS CHARGED

YOU practice the DANGEROUS practice called “Hearsay Medicine” and YOU need to be CORRECTED and CURED from YOUR maladaptive illness thoughts!

Be thankful its just “Hearsay Medicine” that YOU need to be CURED from because tomorrow YOU can wake up and YOU can be that patient.

No one is immune, I can guarantee YOU that, not even YOU!

Why do you say that I am guilty???

-Because you said someone else said the answer.

-Because YOU “assume” your friend the psychiatrist knows what they are talking about and YOU didn’t double check for “CYA” purposes and to see if what YOU heard is actually true!

-Because YOU “assume” sites like Kevin MD are always correct.  How do YOU know that sites like that are always correct?  Did you double check?

-Because you listen to your employer and don’t double check for “CYA” purposes.  Just because your employer says it, it doesn’t mean its correct and it doesn’t mean YOU will not get sued!

-Because YOU also “assume” the CDC toolkit is correct.  How do YOU know the CDC toolkit is correct if you didn’t research the illness?  What makes YOU think the CDC toolkit is actually correct when their scientists cant even follow proper lab protocol and they expose everyone in their lab to things like Anthrax?

Be glad I am telling YOU this instead of the malpractice lawyer or the State Board!

One must never “assume” when it comes to a patient. One must always double check so one doesn’t actually harm or kill the patient.

Do YOU think just because YOU went to a medical school with an overpriced name  that charges an overpriced tuition makes YOU better than someone who goes to any of the other medical schools?

If your employer dictates what to say to the patients, maybe its time to find another job because obviously they do not care about the patients.

It YOU didn’t know this, it doesn’t matter what your employer says, YOU can still get sued!

CDC Toolkit, Kevin MD,  Mayo Clinic and many other “supposed” sources of information about this illness and other illnesses such as Lyme, Gulf War Illness and other “politically incorrect illnesses” are not correct. Surprise Surprise!’

They don’t even have the right name for the illness on their websites! What makes YOU think their information will be any better?!?!?!?!

Im sorry I have to tell YOU this, but your psychiatrist friend is not correct either.  Im not sorry I have to tell you that your friend is not correct because this illness  is not a psychiatric illness. It looks like your friend is suffering from “Hearsay Medicine” like YOU are.

There also happens to be an epidemic called “psychobabble ” that many health practitioners  actually believe.

If YOU Get Sued for Malpractice ?

Harvard  Medical school will not get YOU off the hook?

Your employer will not get YOU off the hook!

CDC will not get YOU off the hook!

Kevin MD will not get YOU off the hook!

Mayo Clinic will not get YOU off the hook!

Whoever else YOU referred to will not get YOU off the hook!

Your friend the psychiatrist can not get YOU off the hook!

As a matter of fact, everyone who YOU thought who was “your friend” will not be the friend YOU thought they were!  They all disappear when the medical boards and the malpractice lawyers come-a-calling!

YOU ARE A BULLY!

Quite frankly,

Shame on YOU!

How dare YOU treat these patients this way!

YOU forgot to “Do No Harm.”

Who do YOU think you are?

Do YOU think your something special because YOU are Jane or Joe doctor who went to Harvard Medical School which is no better than any of the other medical schools that YOU were penny wise and dollar foolish for paying for an over-priced tuition for paying for an overpriced name?

Did YOU think that YOU did not harm the patient when YOU told them their illness was all in their head or one of those other classic statements?

Does it EMPOWER YOU TO BULLY THOSE PATIENTS?

What gives YOU the right to verbally abuse a patient or look at them like they have 10 heads on their shoulders just because they have one of these illnesses?

When the patient told YOU that they had either M.E. or even Chronic Fatigue Syndrome, or the other controversial political illnesses such as Lyme, or Gulf War illness, did YOU put down that stethoscope because YOU decided that YOU didn’t need do a physical exam because YOU thought those patients were a head-case?

The patient employs YOU, do YOU realize that?

YOU get paid because of the patients, whether they pay YOU cash or if their  insurance pays YOU.  Did YOU not realize either?  Or did YOU forget because YOU drive an expensive car now?

Did YOU not learn, if YOU cant identify what is wrong with the patient, that YOU either should say that YOU need to refer to them to someone else, that its out of YOUR area of expertise,

or,

Oh MY, do YOU think YOU could actually do this!

Did YOU not learn its ok to say “I don’t know what YOU have.”

Or are YOU to proud to say that?

Pride

Remember, Pride always comes before the fall!

Because YOU WILL FALL if the patient becomes disabled, homebound, bedbound or even dies.

Yes, patients do die from this illness.

Don’t believe everything YOU read in the newspaper or what you hear from someone else and then start preaching it yourself when you don’t even really know if what YOU are saying is correct!

Truth or Consequences

If one wants to be in the people helping profession, then one needs to  OPEN THEIR EYES and see the propaganda!

There is such a thing called TRUTH!

TRUTH will never fail YOU!

When it comes to TRUTH, YOU will always be able to look in the mirror because TRUTH will keep you from abusing sick patient!

TRUTH will even keep YOU from harming or killing patients because YOU referred to the wrong recommendations!

TRUTH will also keep you from getting sued and keep your Medical license!

Its always the TRUTH that YOU know will be the TRUTH that will set YOU free!

Truth Hurts

Yes, the TRUTH DOES HURT NOW DOESNT IT!

Just think how those patients HURT when YOU treated them in the disrespectful and abusive way that YOU treated them!

Speaking this TRUTH that HURTS is necessary these days because no doctor or no other health practitioner has no right to treat any patient the way these patients have and are being treated!

If someone doesn’t speak this TRUTH, then the patients will continue to be disrespected, hurt, and abused by “Hearsay Medicine” practitioners.

If YOU are guilty of this,  and what YOU read today  touched you and  made YOU think that YOU just have been rude to patients with the diagnosis or “politically incorrect diagnosis” that I mentioned above and other diagnosis for that matter, then YOU need to go to pull those patients charts and call those patients, and give them the long over-due apology they deserve!

“The Other Side Of The Stretcher” (c) 2015

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

Trolls

“Plagiarizers”

Credit is given for images in this blog.

If you don’t see credit and you see your image,

please leave a note in the comments so credit can be given.

Thankyou!


Malaise…Lets discuss this!

 

 

Malaise…

Lets discuss this!

 

I will point out again like I have before, remember, im coming from an RN point of view for the benefit of the patients because I was an active RN 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 because I would end up sounding more like an angry patient than a nurse who is very very disappointed because of the lack of the standard of patient care in regards to this illness.

 

Do you know what “Malaise” is?

 

Before I get into detail about what “Malaise” is, I just want to point out a few things.

I just recently did another post related to “Malaise”, It probably sounded… very…severely opinionated because of what I named the post.

The post could’ve sounded like a controversy type thing, then even more so.

The post was about the symptom described on the CDC 1994 Fukuda Definition of CFS “Post-Exertional Malaise lasting more than 24 hours.”

I did that post for a reason, the reason being, because I don’t think people including the physicians are seeing what the significance is, of this one little word called “Malaise.”

 

Clarification!

I will also clarify I am NOT a “word” nerd, but I am a stickler when it comes to a level of patient care. That level should not be compromised at all, especially this particular example because so many patients have become disabled and homebound because of the misinterpretation of this symptom because of the use of that little word called “malaise” that was the wrong word to use.

Quite frankly, in my personal and professional opinion this was unacceptable, this was negligent, this was nothing less than a crime!

Patients have suffered to the extent that no one should ever have to suffer because of basic incompetence and lack of knowledge of medical terminology!

This was a disgrace!

Shame on the late Dr. Stephen Straus!

Shame on Dr Keiji Fukuda!

 

What Is Malaise?

 

So, the question is, Do you know what “Malaise” really is?

I searched even further than I did for the original post for meanings of “Malaise” from other dictionaries, including medical dictionaries and not just Websters, etc.. to explain with it is and why malaise doesn’t even touch what we physically feel with a 10 foot pole!

 

Medical-Dictionary The Free Dictionary

Medical-Dictionary Free Dictionary has 8 different definitions for “Malaise”
from 9 different Medical and Nursing references which are listed below.
So there are multiple sources, no bias.

 

malaise /mal·aise/ (mal-āz´)

a vague feeling of discomfort.

Dorland’s Medical Dictionary for Health Consumers. © 2007 by Saunders, an imprint of Elsevier, Inc. All rights reserved.

 

mal·aise (ma-laz, -lez)
n.
A vague feeling of bodily discomfort, as at the beginning of an illness.

The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.

 

malaise

Etymology: Fr, discomfort,

a vague uneasy feeling of body weakness, distress, or discomfort, often marking the onset of and persisting throughout a disease.

Mosby’s Medical Dictionary, 8th edition. © 2009, Elsevier.

 

malaise

[malaz]

malaise general term for a vague feeling of generalized discomfort.

Segen’s Medical Dictionary. © 2012 Farlex, Inc. All rights reserved.

 

malaise (melāz´)

n a general feeling of discomfort or uneasiness, often the first indication of an infection or other disease.

Mosby’s Dental Dictionary, 2nd edition. © 2008 Elsevier, Inc. All rights reserved.

 

malaise

Internal medicine A vague feeling of general discomfort, sensed as something “just ain’t right”.

McGraw-Hill Concise Dictionary of Modern Medicine.
© 2002 by The McGraw-Hill Companies, Inc.

 

ma·laise (mă-lāz’),

A feeling of general discomfort or uneasiness, an “out-of-sorts feeling, often the first indication of an infection or other disease.

[Fr. discomfort]
Farlex Partner Medical Dictionary © Farlex 2012

 

ma·laise (mă-lāz’)

A feeling of general discomfort or uneasiness, an “out of sorts”feeling, often the first indication of an infection or other disease.

Medical Dictionary for the Health Professions and Nursing © Farlex 2012

 

ma laise (ma-laz)

A feeling of general discomfort or uneasiness, may be a first indication disease.

Medical Dictionary for the Dental Professions © Farlex 2012

 

Is the “Malaise described above YOUR symptom or is it something else?

My question is,  is the symptom “Malaise” in the

1994 Fukuda Defintion for CFS

symptom that is called

“Post-Exertional Malaise lasting more than 24 hours”

the SAME Malaise in any of the definitions for Malaise from the different medical and nursing sources I posted above, that same “Malaise” you experience?

 

Scratching My Head?!?!?…..

 

Did Dr. Keiji Fukuda or did Dr. Stephen Straus publish their own dictionary that we know of that gave their own meaning for the word “Malaise”?

I did do a search just to double check that and I did not find a Fukuda or Straus Medical Dictionary!

But are we absolutely sure about that?

Could their dictionary be out of print?

Do you think we need to contact the librarian at the NIH to double check that just to make sure?

Do you think we need to contact Dr. Keiji Fukuda over at the WHO to double check with him?

 

Now That We Have That Established!

 

Since I pointed this issue out about the word “Malaise”, is it easy to understand and see why physicians and other healthcare practitioners did not recognize this symptom as a key hallmark symptom of the illness and possibly and probably dismissed it?

Since “Post-Exertional Malaise Lasting More Than 24 hours” was originally listed as the last symptom on the list of the The CDC 1994 Fukuda Definition for CFS that was published in 1994, would it be even more understandable why it was probably missed as the key hallmark symptom of the illness after reading the meaning of the word “Malaise” from all of the different medical sources?

 

PLEASE LEAVE YOUR FEEDBACK!

 

If you happen to be reading this blog post today, please leave some feedback to let us know if the “Malaise” is the same symptom you experience according to the definitions in the medical and nursing sources that I listed above.

Is your symptom the same symptom that is listed in the 1994 Fukuda Definition for CFS“Post Exertional Malaise lasting more than 24 hours” or would you call your symptom something different or a different medical word or description?

 

In other words,

 

Does “MALAISE” have anything to do with your symptom that you experience after activity whether trivial, cognitive, exertional, or exercise?

Please let us know what YOU think the symptom should actually be “called” that you experience!

Thanks so much in advance for your feedback!

I do respond to the posts because I am a conversationalist because I am a people person!  To be a nurse, you have to be a people person.  Even though im not active in the RN field at this time, im still that people person. Once a nurse always a nurse!

So if you do respond in the comments, I will reply back to you! 🙂

Thanks again so much!

 

“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!


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!