Author Topic: PANDORA: 2 written statements for IOM  (Read 2729 times)


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PANDORA: 2 written statements for IOM
« on: January 25, 2014, 08:07:38 PM »

From Tom Kindlon on Co-Cure
 PANDORA Org submitted two written comments to the IOM committee for
 the first public meeting. The Needs of the Severely Ill has pictures
 to show how people suffer with this illness and asks for provisions.
 Needs of the Severely Ill:
 Critique of the NICE Guidelines (2007):

1. Needs of the Severely Ill:
 Lori Chapo-Kroger, RN
 President & CEO
 (231) 360-6830
 January 22, 2014
 To:Institute of Medicine Committee on Diagnostic Criteria for ME/CFS
 Re: Important points to remember during thestudy Needs of Severely Ill in Creating a Diagnostic Criteriafor ME/CFSAs you consider creating or confirming a diagnostic criteria for myalgic encephalomyelitis /chronic fatigue syndrome, we want you to give consideration to the severely ill. Often these individuals are housebound or bedbound and thus invisible to the public’s eye. If they do make a doctor’s appointment, the doctor doesn’t see the suffering they experience on other days.
 A 2009 study in the United Kingdom showed that approximately 25% of ME/CFS
 patients are largely housebound or bedbound.  That study was conducted by
 Buckinghamshire New University and National ME Observatory and their conclusion
 seems to hold true in other countries.
 (2 photos of Ben DePasquale)
 Ben DePasquale, before and after. Second photo is him at age 22, when a WHAM 13 news report that said:“Ben is almost completely bedridden. On a good day, he can take a few steps with a cane. At 6’2”, he’s down to 118 pounds. He need others to wash his hair and cut his food. In 2010, he left the house just twice."
 (two photos of Laurie Bertrand)

 Laurel Bertrand, before and after.  Second photo is her video testimony to the Chronic
 Fatigue Syndrome Advisory Committee in 2009.  She can only speak in a whisper.  She
 only takes sponge baths.
 (Photo of Amberlin Wu)

 Amberlin Wu in her mid-30's, undergoing experimental treatments in a hospital in 2010.
 For months she had been unable to stand without falling, and then she developed shingles.
 The treatment caused headache, nausea and an exacerbation of light and sound sensitivity.
 But she did it because she was grasping at any hope.  She died within 2 years.
 (Photo of Stephen Pagenetti)

  Stephen Pagenetti at about age 18 was featured in the movie "I Remember ME."  The
 narrator said "He hadn't been able to sit up, stand without passing out, or even eat on
 his own for two years.
 The only way Stephen was able to attend his high school graduation was in a hospital bed
 and being transported and monitored by paramedics.
 (two photos of Mike Dessin)

 Mike Dessin after his recovery when he was severely ill.  At his worst, Mike had
 pancreatitis, could only lift his head a few inches, weighed 102 pounds at a height
 of 6'3", heart failure and a collapsed lung.  He had to stay in a pitch black room and
 any touch was too much stimulation.  He was diagnosed with chronic fatigue syndrome
 as the cause.
 We show you these images and tell of their condition so you know there are different
 levels of disability in ME/CFS that are not identified in most of the existing definitions.
 Some other diseases have stages or levels that inform the physician of appropriate
 treatments.  This is needed in this disease.
 Mike Dessin after his recovery and when he was severely ill. At his worst, Mike had pancreatitis, could only lift his head a few inches, weighed 102 pounds at a height of 6’3”, heart failure and a collapsed lung. He had to stay in a pitch black room and any touch was too much stimulation. He was diagnosed with chronic fatigue syndrome as the cause.We show you these images and tell of their condition so you know there are differing levels of disability in ME/CFS that are not identified in most of the existing definitions. Some other diseaseshave stages or levels that inform the clinician of appropriate treatments. This is needed in this disease.
 Disease Tests:
A way to identify the severely ill is important so the physician knows what tests can be tolerated. The 2-day cardio pulmonary exercise test is becoming known for its ability to objectively measure the post-exertional neuro-immune exhaustion that is a hallmark of this disease. However, for the severely ill, this test may not be appropriate because they would not be able to complete the test, especially two days in a row. This does not mean they don’t have post-exertional neuro-immune exhaustion. But in their case,
Just brushing their teeth may bring days of relapse.  An objective test that does not require the severely ill to do activity that will bring them harm would be ideal.
Treatment Recommendations:
Additionally, a way to measure the level of severity is important to knowing how much and what type of activity a person should do. “A subset of people with CFS are so severely ill that they're largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first,” says the Centers for Disease Control Preventionin reference to activity level for the severely ill. A more moderately ill person may need to do 30 minutes of housework a day. A more mild case might be recommended to work part time with some accommodations. A way to identify those in different levels will ensure they are given the correct activity recommendation for their case.
Disability Assessment:
It’s hard to imaginesomeone who is bedbound and unable to feed themselves for days at a time must struggle to get disability benefits. But this does happen with this disease. This is because of misperceptions of the nature of the disease that the name causes and physician lack of knowledge. It’s also due to the relapsing and remitting nature, “push –crash,” experience so that occasionally a person looks well, even though they may end up in a relapse for days or weeks just from one outing. It’s also because the severely ill are largely invisible to the public, even doctors.Identifying those severely ill will not only help educate physicians, but it gives a basis for those severely ill to more quickly receive disability benefits, which is needed not only for income but continued health insurance.
How it’s done in other diseases:For precedent, you might consider these examples:
·Acute leukemia and chronic leukemia
·Cancers with or without distant metastases or inoperable, unresectable or recurrent
·Breast cancer either inflammatory or not
·Alzheimer’s either early onset or not
·Multiple sclerosis either malignant or relapsing-remitting, primary-progressive, secondary-progressive or progressive-relapsing
Most of these have objective measures, such as the level of blood markers, extentof damage in the body or likelihood of improvement or rate of progression.
What We Recommend:
Ideally we think three or more levels or stages of the disease should be developed and included in the diagnostic criteria.  Ideally, an objective measure of these levels should be identified and included in the criteria.
/s/ Lori Chapo Kroger
Lori Chapo-Kroger, RN
President and CEO of PANDORA Org


2.  Critique of the NICE Guidlines (2007):
 January 22, 2014

 Critique of NICE Guidelines (2007):

The reason these United Kingdom Health Service guidelines are flawed and harmful is because they are based on outdated and flawed research and flawed interpretation of research results.

NICE Guidelines Include Harmful Treatment Recommendations

NICE Guidelines 2007 states that cognitive behavioral therapy and/or graded exercise therapy should be offered to people with mild or moderate ME/CFS and provided to those who choose thee approaches.  It says these are the interventions for which there is the clearet research evidence of benefit.

This is an inaccurate statement as graded exercise, the type that includes pushing beyond fatigue, has been shown to not be beneficial.  It is actually harmful.  This is revealed in a report conducted by International Association of CFS/ME (IACFS/ME) where the reporting of harms associated with graded exercise therapy an cognitive behavioural therapy in these patients is found to be lacking in the research conducted and highlights that healthcare professionals, researchers and patients need high quality data on harms to appropriately assess the risks versus benefits of CBT and GET. 1
Additionally, the Centers for Disease Control and Prevention recommends pacing activity and cutting back on activity if the activity level exacerbates symptoms.  In some cases, this might mean only stretching in a supine position an small increments of body weight (legs and arms) lifts for strength.  Someone more able can do more activity.  But pushing is discouraged as being harmful.

Moreover, the subjective research upon which NICE relies on to support the view of graded exercise does not take into account the most recent biological research findings that ME/CFS patients have:

·         Oxidative stress 2
·         Muscle acidity
·         Muscle fibre abnormalities and muscle damage 3
·         Oxygen transportation impairment
·         Circulatory and cardiac abnormalities 5
·         Mitochondrial dysfunction

Moreover, NICE guidelines continue to be predominantly influenced by subjective psychological research conducted by the same individuals who have a hand in developing the guidelines in the first place.

The 2011 Pacing, graded Activity an Cognitive behavior therapy: a randomized Evaluation (PACE) Trial in England, led by psychiatrists, that was a randomized controlled trial that compared cognitive behavior therapy (CBT), graded exercise therapy (GET), adaptive pacing therapy an specialized ecdical care.  Its flawed results have been touted as confirming the NICE guidelines for this disease, whereas it does not.  The PACE trial once again focused on subjective responses of patients and is heavily influenced by a behavior-focused erroneous paradigm.

The paper was found to omit the reporting of harms as identified by the IACFS/ME 6.  Furthermore, conflicting results by similar larger scale research conducted by the ME Associaton at the same time as the PACE Trial is not considered in the formation or modification of NICE guidelines.  Pacing is rated very strongly as the most effective form of management and is consistent with several other surveys of patient opinion and a large amount of anecdotal reports, incuding an ME association 2010 survey. 7

·         Results for CBT: 25% improved; 55% reported no change; 20% made worse (sample size=2137)

·         Results for GET: 22% improved; 21 reported no change; 57% made worse (sample size=997)

·         Results for pacing: 71% improved; 24% no change; 5% made worse (sample size=906)
A similar study to the PACE trial, which was carried out in Spain and published in January 2011, found no benefits from CBT and GET when compared to standard medical care. 8
Contrary to the assumptions of many, physical deconditioning does not seem to be a perpetuating factor in CFS. 9

The NICE guidelines fails to take into considering the conflicting research findings on GET and CBT and pacing, as well as biological research findings into the benefit and harms of exercise.  Guidelines shoud not be based on just subjective research alone conducted by the same individuals that have a hand in creating the guidelines.

Lastly, the ME Association identifies that the form of adaptive pacing used in the PACE trial is not the same as the model they recommend and which is favoured by the overwhelming majority of people with ME/CFS. 10  Clarification of what pacing, gradual activity and, graded exercise actually specifies to needs clarification for both research and clinical recommendation.

NICE Guidelines Harm

Because its foundation is outdated, flawed limited research, the NICE guidelines on ME/CFS fail to educate physicians on the true nature of the disease.  It fails to confirm the multi-system dysfunctions and the appropriate World Health Organization classification of the disease as neurological, which is supported by preponderance of research evidence. 11

By not addressing what the disease is biologically, the NICE guidelines perpetuate the erroneous idea that the disease is a group of “medically unexplained symptoms,” which clinicians assume means it is psychological.  Of course, this is contrary to the ample biological research in the last 20 years.

Patients are time an time again not treated with respect and understanding of the biology, severity and impact of their symptoms by neurologists and general practitioners who operate within the NICE guidelines.

Additionally, the guidelines aim of “influencing practice in the real world” is discredited by their failure to acknowledge the physiological abnormities identified by the available research.  The gap between research and practice remains vast.  Further investigation into patients symptoms are prevented from being investigated by NICE guidelines.  In practice patients are receiving no investigation into symptoms or testing as used in research which finds abnormalities, and therefore receiving no assistants in better managing the symptoms that arise.

Nice guidelines 2007 states that referral to specialist CFS/ME care should be offered:



11 Categorised available research by abnormality.

·         Within 6 months of presentation to people with mild CFS/ME
·         Within 3-4 months of presentation to people with moderate CFS/ME symptoms
·         Immediately to people with severe CFS/ME symptoms.

This does not happen in a large majority of cases, as identified by Action for ME investigation into England’s National Health Services specialist services. 12 

Similarly, the Aviva Health of the Nation Study in 2011 cited M.E/CFS as the most difficult condition for GPs to refer; exactly the same as it did in a similar report in 2003.  This is hardly surprising given the admission by most PCTs that they have not complied with either the National Service Framework (NSF) for Long Term Conditions or the NICE Guidelines for ME/CFS.

While such an outline for referral to an ME/CFS specialist is good, in the U.S., no specialty has embraced the diseases leaving patients lacking expert knowledgeable care.


/s/ Lori Chapo Koger

Lori Chapo-Kroger, RN
President and CEO of PANDORA Org
« Last Edit: January 26, 2014, 04:47:56 AM by Wildaisy »
No problem can be solved from the same level of consciousness that created it.      Albert Einstein


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Re: PANDORA: 2 written statements for IOM
« Reply #1 on: January 25, 2014, 09:44:42 PM »
Thank you, Tom Kindlon, for posting this on Co-Cure for Lori.  And thank you, Tom Kindlon, for writing the Critique of the NICE Guidelines.

Too bad the IOM panel has a pre-destined objective they must fulfill to give a psychological definition for "ME/CFS."  None of what PANDORA says here will make any difference whatsoever; it will simply give the IOM "evidence" that M.E. patients supported this IOM contract by participating in the process.

Remember, Lori Chapo Kroger and Tina Marie Miller Tidmore met privately with IOM personnel the week before HHS announced this IOM contract--and they denied meeting with them at first and then later confirmed it.

At this point, PANDORA is clearly supporting this IOM panel in its drive to give ME/CFS a psychological definition, just as its collaborating organization, CAA, is supporting this IOM "study."

After all, PANDORA and CAA consider themselves the "adults" among the M.E. community.  They have decided that this IOM "study" is good for M.E. patients and they do not care what we troublesome patients may say.  They know what is best for us and they want us to stop fighting this IOM "study" and start doing what CAA and PANDORA are telling us to do. 

After all, CAA and PANDORA have been looking after the interests of M.E. patients for decades now and look at the progress they have made for us.  (NOT!)

If you have enjoyed the lack of respect, the lack of real research and the lack of effective treatments for M.E. and "CFS" for the past decades, then hurry and do what CAA and PANDORA are saying.  They are the ones who sold out patient interests to gain favor with their government buddies, and they do not want patients to interfere with their "seat at the table" with government by making demands for such things as real biomedical research and effective treatment.
« Last Edit: January 25, 2014, 10:50:30 PM by Wildaisy »
No problem can be solved from the same level of consciousness that created it.      Albert Einstein

Justin Reilly

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Re: PANDORA: 2 written statements for IOM
« Reply #2 on: January 26, 2014, 10:02:34 AM »
These documents are not the way I would have written it, but I'd say not bad.  This of course doesn't excuse PANDORA's failure to oppose the contract now.
Silence = A Living Death


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Re: PANDORA: 2 written statements for IOM
« Reply #3 on: January 26, 2014, 04:49:16 PM »
Not everyone likes PANDORA's statement as much as you do, Justin.  Here are some of the comments posted on PANDORA's facebook page:

    • Danny Ze-dog Unfortunately, this document is problematic where it matters most, and repeats the fatal errors of many other 'educational materials' about severe ME and exercise:

      “A subset of people with CFS are so severely ill that they're largely
      housebound or bedbound. They require special attention, including a modified approach to exercise.  Hand stretches and picking up and grasping objects may be all that can be managed at first,” says the Centers for Disease Control Prevention in reference to activity level for the severely ill"

      The major point there, besides the assumption that any form of exercise is possible for severe ME patients, is 'at first'.  This, in combination with the rest of the CDC's recommendations, suggests a graded approach to exercise even in severe ME patients.  Even the mildest forms of graded activity can be harmful to people with severe ME.  Please don't refer to the advice given by the CDC, even in the form of materials authored by Drs Klimas, Bateman, or Lapp, which do not take into account the true limitations of severe ME. 

      Can you amend the document and send an amended copy to the IOM?  The last thing we need is more guidelines that contain potentially harmful advice to severely affected patients.12 hours ago · Edited · Like · 2
    • Rebecca Fromdaforums While I appreciate Pandora's efforts to feature severely ill patients, I'm deeply disturbed by your recommendation about exercise that Danny Ze-dog points out. The CDC's advice on exercise for severe patients, which you parrot, can cause permanent physical damage to some of the patients you represent. 

      I second Danny's request.  Please amend the document, send an amended copy to the IOM, and let us know when you have done so.  Thank you.19 minutes ago · Edited · Like
My comment on PANDORA's facebook page:
 I agree with Danny and Rebecca.  As a person with severe M.E., you are insulting my intelligence by trying to tell me you are helping me and other sufferers when you tell the IOM I need to exercise.
« Last Edit: January 26, 2014, 06:54:18 PM by Wildaisy »
No problem can be solved from the same level of consciousness that created it.      Albert Einstein


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Re: PANDORA: 2 written statements for IOM
« Reply #4 on: January 27, 2014, 03:26:17 AM »
Lori Chapo Kroger is on the PANDORA page now arguing that even severe ME patients need exercise.  She is making a big deal out of the fact that she used to be a nurse.

  • Wildaisy Fl I agree with Danny and Rebecca.  As a person with severe M.E., you are insulting my intelligence by trying to tell me you are helping me and other sufferers when you tell the IOM I need to exercise.10 hours ago · Like · 1
  • Lori Chapo Kroger I'm a retired ICU charge nurse and we had comatose patients who had traumatic brain injuries or other diseases. They could not move on their own so we had to do passive range of motion (no exertion on the patients part) so their muscles wouldn't atrophy, or they wouldn't get contracteurs. The first muscles to contract are the hands that close into a fist. When that happens, you cannot open their hands because they are forever frozen shut. To prevent this, PT would use a squishy ball and with their hands help the comatose patient grasp and squeeze the ball. This is basic care for any person who is critically ill. Besides the hands, the PT or nurse would move each limb and joint to prevent contracteurs. All three of you had to grasp your tablet or laptop and move your fingers to type your posts. This movement is good for the health of your muscles and joints.3 hours ago · Edited · Like
  • Danny Ze-dog Lori, you missed my point.  If what you described is all your document had said, and had provided a warning against graded exercise or activity beyond that, I would have had no problem with the document.  The problem lies with citing CDC literature that *does not stop there*, and even in the quoted section states that the activities you mentioned are all we can do "at first", easily giving naive doctors (which means pretty much all of them, with a handful of exceptions we all know about) the impression that even for severe patients, a graded activity approach is helpful. 

    The passage quoted from the CDC is only minimally relevant to the document anyway, as it only briefly mentions severe cases and does not provide clear guidelines for them.  Why include it at all?  Why have the only Treatment Recommendations in a document for severe patients be about activity?  What about proper hydration, dealing with OI, and other measures that an actual ME doctor would recommend for such patients? 

    As advocates, we need to be aware that everything we say will be viewed in the context of the existing dogmas, and we must be extremely vigilant about wording in our advocacy materials that could be misinterpreted. I can't tell you how many times I or people I know have said that doctors told them "well look, it says you can increase exercise on the CDC site".  Especially because you are providing this material to the IOM committee, it should be amended to remove the CDC quote;  if discussing the activity issue, consider using the cautioning statements in the "Self-Powered Exercise" section in the Canadian Consensus Overview instead.2 hours ago · Edited · Unlike · 2
  • Rebecca Fromdaforums I'm very familiar with passive range of motion exercises because my mother or my aide perform them on me for half an hour each day.  (I'm not able to move around much on my own.)  What you describe and recommend in your document are not passive range of motion exercises.

    I again ask you to amend your document, per Danny's comments.2 hours ago · Edited · Unlike · 1
  • Wildaisy Fl Again, I agree with Danny and Rebecca.  You need to change your document.  You are insulting the intelligence of severe  M.E. patients when you tell us that you are helping us by telling the IOM that we need exercise.  We do not.  We know that exercise harms us.  Change your documents.10 minutes ago · Like
  • Wildaisy Fl Lori,so you are a nurse.  That does not mean that you know more about what is good for me than dr. Cheney does--and Dr. Cheney tells me exercise is bad for me and for other severely affected ME patients.  So do other experts.  As a nurse, are you saying all these doctors are wrong?  If so, present some kind of proof, not just your statements.  I do not consider you an expert.  I do consider Dr. Cheney an expert--and I'll take his opinion over yours any day. Stop insulting ME patients by trying to tell us that you are helping us by telling IOM we need exercise.  We know that is not true.  Change your documents.7 minutes ago · Like
No problem can be solved from the same level of consciousness that created it.      Albert Einstein


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Re: PANDORA: 2 written statements for IOM
« Reply #5 on: January 27, 2014, 04:02:18 AM »
This is like the CBT "advice".  The CDC and certain MDs say CBT isn't curative (wink, wink) but if a patient goes for treatment in the "real" world then the odds are high they will be "treated" by a psychobabbler who is convinced that "CFS" is a psychiatric condition and therefore has license to do whatever they want. 

"GET" is the same thing.  What should be a very nuanced treatment is very "black and white" in the "real" world.  "Real" advocates should recognize this and insist that neither be mentioned due to the very real possibility that the "average" practitioner is unable or unwilling to recognize the "nuance" involved in these "therapies".  That is something that Elizabeth Unger should recognize since she is concerned that the average PCP is ill equipped to understand the CCC. 


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Re: PANDORA: 2 written statements for IOM
« Reply #6 on: January 27, 2014, 04:37:04 AM »
And yet, here is PANDORA, whose leaders say it is an "advocacy" organization for patients, telling IOM that severe M.E. patients need exercise.

Could they be making their lack of consideration for patients any clearer?
No problem can be solved from the same level of consciousness that created it.      Albert Einstein


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Re: PANDORA: 2 written statements for IOM
« Reply #7 on: January 27, 2014, 04:55:44 AM »
And Lori Chapo Kroger continues on PANDORA's facebook page:

  • Anne LiConti Lori, that is a screen shot from the "I Remember Me' documentary.  Did you get permission to use that?  Do you realize there are HIPPA laws now? Did you get a signed release from Stephen or his parents to use that.about an hour ago · Like
  • Anne LiConti I saw your document, I dont see permission from any of those patients or from the deceased patients famlies.  For the record, im an RN too, you should knwo that you dont take pictures of paitients or use patients pictures without a signed release.about an hour ago · Like
  • Anne LiConti ME patients have PENE< they cant exercise, they arent the comatose patients.  So stop the propaganda here that the CDC and all their cronies doabout an hour ago · Like
  • Lori Chapo Kroger Low level of activity initially is in harmony with recommendation in the IACFS/ME primer on page 22 and in the CCC starting at the bottom of page 11. The reason that statement is in there is to emphasize the much lower level of body activity is recommended for the severely ill, which is why they need to define criteria for severely ill. Actually, I don't like the word "exercise" in reference to ME. "Body activity" is better. To the healthy world, exercise means exertion. So, while we appreciate you reading the document and giving us your opinion, we will not change or revise it. However, you can turn in your own comments to the committee.42 minutes ago · Like
  • Wildaisy Fl PANDORA's statement tells the IOM that even severely affected ME patients can do exercise.  Do you really think these IOM people who know nothing whatsoever about ME to start with are going to get into subtleties like your explanation?  I don't.  They will read PANDORA's recommendation as: Patient organization says even severely affected ME patients need exercise.  Period.  You need to change your statement.
  • Anne LiConti Your using that kid to promote GET  for me.  He is in that condtion because of exercise and so is Jessica Taylor for tha  matter.  Thats propaganda to promote GETabout an hour ago · Unlike · 1
  • Anne LiConti And we all know that the CDC is wrong. Enlander just did a study.  Shame on your Lori, you are unethical!!!! GOVERNMENT INFORMATION COULD BE HURTING CHRONIC FATIGUE SYDROME PATIENTS, NEW RESEARCH... www.americanbankingnews.comPRESS RELEASE: NEW YORK, NY (11/20/2013) – An untold number of New Yorkers, perhaps well over 100,000, who have been diagnosed with Myalgicabout an hour ago · Unlike · 1
  • Jay Spero Lori, with all due respect, to feature the most controversial and damaging aspect of probably the most vulnerable among us, is out of context to people, especially medical professionals, who know little or nothing about ME. It just doesn't make sense; there are so many items one could compile on a fact sheet about severe ME that are extremely important, without mentioning activity in this context. It strikes me as a very strange way to present our case, questionable at best, potentially dangerous at worst. That you're actually defensive about it seriously makes me wonder what's going on here.52 minutes ago · Unlike · 2
    • John Buettner Read the testimony of Anthony Hardie, a gulf veteran who suffers from Gulf War Illness, now known as chronic multi-symptom illness (CMI). It details the carefully crafted step-by-step process the CDC, in concert with their henchmen at the IOM used to effectively condemn 250,000 suffering heroes to the same future that we PWME have suffered with for 3 decades.

      Change the names and this is a perfect parallel of our current situation. What makes you think that they aren't running the same plays against us?

      Paraphrasing something I heard years ago, "those that don't learn from history are doomed to repeat it". Testimony of Mr. Anthony Hardie, Gulf War Veteran With the controversy over the US government's Institute of Medicine (IOM) contract for 'ME/CFS' and the brewing one over the mysterious NIH P2P initiative, I think it would be wise for every ME and CFBy: Danny Ze-dog55 minutes ago · Like
    • Danny Ze-dog Hi Lori... I find that most patients, even significantly disabled ones, do not know as much about severe ME as they may assume.  That is not meant to be offensive in any way; most of our 'experts' do not either. That's because they almost never see severe patients, and certainly not the full range of severity, since we can almost never go see them.   One of the biggest problems severe ME patients face is that very few clinicians or fellow patients, even those who are quite severely afflicted themselves, understand how bad things can get at the true bottom of the Bell scale.   The fact is, with severe ME you use what little energy you have to survive the day.  If you have any extra, you spend it on ADL's.  Or, if you're not so smart, you blow it from time to time on things like advocacy.  But most don't even have that much energy.  I didn't when I was more severe than I am now.  I couldn't use a computer at all.  Every drop of energy would be spent on trying to chew food and use the toilet (with assistance).  That's it. Seriously.  No room for even mild 'maintenance' or 'rehabilitative' activity.  No 'spoons' for that, ever.

      You said: "Low level of activity initially is in harmony with recommendation in the IACFS/ME primer on page 22 and in the CCC starting at the bottom of page 11."

      You are misunderstanding what is written in the CCC.  Nowhere does it make such a generalization for severe patients; in fact, the section of the CCC Overview that you cited states:

      "Medical Management must be optimized
      before introducing exercise. Patients with less
      severe symptoms that are under control may
      benefit from very gentle exercise to maintain
      functionality. Some patients may only be able
      to exercise in bed, but exercise is not
      recommended for all patients."

      Call it exercise, call it a mild activity program.. it is specifically NOT recommended for all patients in the very section of the CCC overview you cited.

      As for the IACFS/ME's primer, as you may know there has been intense criticism of that document on the specific point of exercise for more severely affected patients, to the extent that (as we heard at the last webcast CFSAC) Ken Friedman was going to revise that section.  I don't know if his revision will be much better or not; I can only hope so.  As for the existing version, please see my Note:

      Please also bear in mind that a few clinicians - mainly Drs Bateman, Klimas, and Lapp, continue to make public statements on exercise that have been heavily criticized by patients of all severity levels, yet one or more of them have had a hand in shaping CDC material, the IACFSME primer, and the CCC.  These views are strongly contested by many experts, including Drs Hyde, Enlander, Cheney and Chia, as well as the ME research pioneer, Melvin Ramsay. 

      And again - why include this as a treatment recommendation at all, let alone the sole one?

      You suggested that I submit my own testimony, which I will, but was hoping I wouldn't have to.  But that shouldn't be the point - if you're advocating for severe patients, shouldn't you try to learn from what severe patients say?  Isn't it a problem that a number of severe patients on a single thread on facebook alone have strong objections to your submission to the IOM regarding what you say about how THEY should be treated?  Members of PANDORA has often argued against division in the patient community.  By ignoring the concerns of some of the very patients you are seeking to speak for, you may be creating such a division.

      Also, I don't have the means to create an elaborate document like PANDORA has, nor the clout of a patient organization.  None of us individual severely affected patients do.  That's why I'm asking you, if you want to advocate for us, to do so in a way that cannot end up harming us.  In this case, by changing the document to reflect reality, and to avoid leading the IOM or anyone else to methods that will end up harming patients like me.   That is all I'm asking.  I'd be happy to help you in that effort.45 minutes ago · Edited · Like · 1
    • John Buettner ADL: Activities of daily living.30 minutes ago · Unlike · 1
    • Anne LiConti If you take a look at "I Remember Me' that kid, his name is Stephen, is already in that bed 2 years, he cant sit up, stand up, because his blood pressure drops and he has feeding tube.  He isnt contracted, and he isnt in a coma, so this coma nonsense she is pushing is wrong.2 minutes ago · Like
    • 14 hours ago · Like · 2
    • Anne LiConti Here is the video with this kid  He starts at 6:11 in the videoI Remember Me - Chronic Fatigue Syndrome CFS 7 of 9 Snyder14 hours ago · Like · 1
    • Justin Reilly Lori, I agree with Danny , Rebecca, Wildaisy and Jay. I have defended PANDORA in the past on some things.  I think overall these are good documents, but please, GET causes so much harm to ME patients that it should never be mentioned except to point out the harms or to say that it may help patients who have already substantially recovered.  I and so many others have been made so much worse by advice to exercise.  Some have died because of GET.

      Also, I'd like to echo the point that PANDORA earlier made a big thing out of unity, saying that people should be punished if they weren't united with PANDORA's view.  I know this was a while ago and said by a former PANDORA leader who is no longer with you.

      Well, since then, I have come to realize that unity is incredibly important for us politically, and unfortunately we are in a political situation. ONLY by presenting a united front as much as is practicable, can we make headway.  We have been given a GOLDEN OPPORTUNITY BY OUR EXPERTS to unite behind their excellent simple demands to (1) cancel the IOM contract and (2) immediately adopt CCC.

      Even if you are on the fence about these issues or have some minor problems with them, I am BEGGING you to change course and unite behind these two simple and effective messages.  This is the only way we are going to cancel or mitigate this disaster.

      This is a war with evil.  No appeasement of our evil enemies.  They will just take more and more from us.  We have seen that time and again.

      If PANDORA does not do this, you will never be forgotten as the org that sided with CAA and HHS in not getting behind these demands.  This decision will haunt you and cause you a huge amount of headaches and trouble.  PLEASE unite behind the experts!  If you do that I for one, will unite behind you and will encourage other patients to also!  Thank you for considering.8 hours ago · Edited · Like · 8
    • Tink Bastian I'm one of those severely ill patients.
      Lori, I'm seriously offended by the text of the document that you are going to submit or already have submitted about severely ill patients.
      Since you are not one of these patients I wonder did you consult with any of us before writing this nonsense about exercise? I can't imagine that any severely ill patient would agree with this. Instead of advocating for better disease management like doctors home visits and home care, things we really need, all you can come up with is this?

      How does this relate to defining a ME definition?
      This doesn't even have to do with treatment, exercise has no place in the daily life of a severely ill patient. We need the basic care first, Build up stronger immune systems by being cared for instead of over doing things because there is no one to help you with daily hygiene or a meal. Care, we need care, not guidelines on how to exercise!

      This is a cheap shot in trivializing the seriousness of the state we are in.

      A last point I want to make is how shocking and distasteful I think it is to use Amberlin's image in this context. Did you get permission from her parents to use her image and mention her illness? IMO these are 2 different issues, the suicide epidemic under the severely ill we have to deal with and the exercise that you are suggesting.7 hours ago · Like · 9
    • Wendy Boutilier I hope Pandora has authorization from the patient to publish this image.7 hours ago · Like · 4
    • Anne LiConti They didnt even get permission from Kim Snyder who did the film. The screenshot  is copyright infringement6 hours ago · Like · 3
    • Rebecca Fromdaforums The problem:  Pandora has created a document about severely ill ME patients and submitted it to the Institute of Medicine.  While the document has some good aspects, it perpetuates the damaging myth that the severely ill can and should exercise.  Pandora quotes the Centers for Disease Control's exercise recommendations for CFS, which can be found here:

      In fact, any form of externally-imposed graded activity, however mild, can have devastating effects on our sickest patients if the activity is beyond their energy envelope. It can cause disease progression in MANY patients, not just the severely ill. 

      By endorsing exercise for the most severe patients, Pandora sends the message that GET should be a treatment for ALL patients.  It will be a terrible blow for all of us if GET, per the CDC, is enshrined in the IOM's final treatment guidelines, which will affect every single neuro-immune patient worldwide.   

      Despite the pleas of several severe patients (see above) to amend the document and re-submit it to the IOM, Pandora president Lori Kroger wrote, "…[W]e will not change or revise it."  One severe patient, Danny Ze-dog, even offered to help Pandora rewrite the document to remove the problematic section(s)!

      Pandora has done some valuable work for us in the past.  It's a shame that the group is now making recommendations to the IOM that may cause permanent physical damage to our most vulnerable patients. 

      Please tell Pandoras's leaders and representatives--including Lori Kroger, Michele Krisko, Tina Tidmore and Toby Vokal--to amend their document. 

      I am tagging some of our advocates so they will be aware of what Pandora has done: 
      Mary Schweitzer Hillary Jan Johnson Liz Willow Jerrold Spinhirne Jen Brea  Jeannette Ketterle Burmeister  Justin Reilly Rivka Solomon Peggy Munson Angela Kennedy John Garcia  Christopher Cairns Lilly Meehan  Libby Boone Mindy Kitei  Maryann Spurgin Wildaisy Fl Aziza Jansen Greg Crowhurst Keith Baker Ella Peregrine Jocelyn Waite Robin Durham Leela Play  Jay Spero Valerie Barnes  Jackie Nancece Robyn Erland Siobhan McElwee  Anne Frou  Leonard Jason  Sorry if I missed anyone who should see this.)CDC - Managing Activities and Exercise - Chronic Fatigue Syndrome (CFS) www.cdc.govFor patients with CFS, learning to manage activity levels is a key part of manag...3 hours ago · Edited · Like · 6
    • Jeannette Ketterle Burmeister This is making me physically ill.4 hours ago · Like · 3
    • Jocelyn Waite Thanks for paging me, Rebecca Fromdaforums. I have had serious misgivings about what I've seen PANDORA doing, especially of late, and Lori, I really can't believe you're quoting the CDC on this. That recommendation has been so thoroughly reviled in our disease community for so long! As a severe ME patient, when I was 100% bedridden and unable to be on the computer some years ago, I literally could not even stretch my back and body the way one normally does several times a day. It used too much energy - energy I needed to feed myself the soft foods I had to have because I lacked the energy to chew.4 hours ago · Like · 4
    • Jocelyn Waite Needless to say, I've come to the conclusion that PANDORA is now in the same category as CAA. Neither speaks for me.4 hours ago · Like · 5
    • Siobhan McElwee I have 2 words:  Vichy. France.   I urge those at PANDORA and the CAA to look it up.3 hours ago · Like · 2
    • Robin Durham oh, great!  I didn't know getting to the point of handling activities of daily living was simply a matter of GRADUALLY INCREASING ACTIVITIES. Thanks, CDC and Pandora for that little bit of magic!  How about you, patients of Pandora?  How is that GRADUALLY INCREASING ACTIVITIES working out for you moderate and mild patients.  Anyone WORKED UP to marathons yet?3 hours ago · Like · 1
    • Siobhan McElwee *FACEPALM*  oh, if I had only known3 hours ago · Like · 2
    • Greg Crowhurst When you talk about Severe ME you are potentially talking about massive hypersensitivity to pressure, touch and extreme pain that you cannot relieve in any way. Any contact with the person must involve great caution. Even the slightest touch can be a torture and a torment, leading to deterioration. Any contact should only be negotiated with agreement. The notion of exercise, even the use of the word is inappropriate in this context. Very, very concerned about the simplistic "treatment" recommendation of GET.  Where are the biomedical recommendations ? Pandora do not appear to have grasped the reality of Severe ME. They are not making safe recommendations;  rather than looking at the severe symptoms, like paralysis, theirs , sadly, is merely another fatigue recommendation. A missed opportunity to grasp the suffering and represent more accurately the symptoms. Activity and exercise are not treatments for ME, the potential danger to people with Severe ME is appalling.8 hours ago · Like · 6
    • Maryann Spurgin I am truly in a state of absolute shock.  Thanks for tagging me, Rebecca. The M.E Society of America was given a speaking spot.  I am too weak to speak, so the statement I prepared will be read by proxy.   For the record, typing on a computer is impos...See Moreabout an hour ago · Like · 2
Does Lori Chapo Kroger's insistence on keeping PANDORA's recommendation for exercise even for severely affected ME patients leave any doubt whatsoever on what PANDORA is doing?
« Last Edit: January 28, 2014, 04:52:10 AM by Wildaisy »
No problem can be solved from the same level of consciousness that created it.      Albert Einstein


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Re: PANDORA: 2 written statements for IOM
« Reply #8 on: January 27, 2014, 12:54:19 PM »
So the above thread was removed from P.A.N.D.O.R.A.'s Fb page?  or does one have to join to see it?  I'm not seeing it.  Thx.


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Re: PANDORA: 2 written statements for IOM
« Reply #9 on: January 27, 2014, 05:40:45 PM »
PANDORA has probably deleted this from their Facebook page.  Don't worry, we have screenshots of it.

I am certainly not a member of anything PANDORA.

Edit:  I was unable to check the PANDORA facebook page because I was recording the IOM meeting and I only have one computer.

I have checked it now and this thread is still there.  I have added the additional  comments to my post earlier in this thread.

PANDORA, and especially Lori Chapo Kroger, have shown their true colors.  They want recognition from government and "a seat at the table" no matter what harm it causes patients.
« Last Edit: January 27, 2014, 11:04:18 PM by Wildaisy »
No problem can be solved from the same level of consciousness that created it.      Albert Einstein


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Re: PANDORA: 2 written statements for IOM
« Reply #10 on: January 28, 2014, 02:48:05 AM »
I still can't find that thread.  Thanks for saving it.


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Re: PANDORA: 2 written statements for IOM
« Reply #11 on: January 28, 2014, 04:56:15 AM »
Right now it is the 5th post down on the left side of PANDORA's page:

You can find it by the picture of Stephen Pagenetti lying on a stretcher.

No problem can be solved from the same level of consciousness that created it.      Albert Einstein


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Re: PANDORA: 2 written statements for IOM
« Reply #12 on: January 28, 2014, 03:15:14 PM »

Trying to reason with her, is like trying to reason with the devil! 
And she still didnt take that picture down!
Believe you me, and im saying this as an RN,
if any of you were in the hospital and she was one of the nurses
on the floor, refuse care from her or even sign out of the hospital.
If she is capable of posting a picture of a disabled kid like that,
promoting unethical treatment so that organization she is part of
can be on the good side of HHS (Propaganda) etc.. then she is capable of  anything.
A disgrace!
I have RN friends that I gave the links to, so they could see that image
and her comments on facebook
and the document with the Severe ME patients , they actually called her "nuts"
and they are fuming and they dont even know her.
"I am able to do all things through the help of Christ, which strengtheneth me." ~Philippians 4:13~


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Re: PANDORA: 2 written statements for IOM
« Reply #14 on: January 17, 2015, 02:01:30 AM »
Yes, there it is -- SUCH a DISservice to M.E. patients everywhere -- bad news--PANDORA.   :( >:( >:(
We having nothing to lose and everything to gain. The war is on!