Tag Archives: CFIDS Chronic Fatigue Syndrome

One More Update



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…

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

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

An Explanation!


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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

Dr. Snell and Dr VanNess of the Workwell Foundation in California: June 23rd, 2013

Dr.Betsy Keller in Ithaca NY: September 17, 2013

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!


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


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:



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.


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!