Comments on the draft National Pain Strategy

http://iprcc.nih.gov/index.htm

http://iprcc.nih.gov/National_Pain_Strategy/Public_Comment_NPS_Draft.htm

For ~26 years I watched my wife suffer with Chronic Pain. She stopped the pain with her suicide of August 7th 2013.

Her Journal is now required reading at Duke University School of Medicine. The local newspaper summarized it thus:

“Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day.” – http://www.kpaddock.org Her Journal may be read at http://www.kpaddock.com and will be available in book form in July.

I recommend that everyone involved read her Journal to understand how bad Chronic Pain is on a day-to-day bases. From the pain itself, too having no family support, mistreatment from the Medical Establishment etc.

Now to address some specific items in the draft report.

There are several place that discus finding ways of measuring Chronic Pain.

A Dolorimeter is an instrument used to measure pain threshold and pain tolerance. Such units do exist: http://en.wikipedia.org/wiki/Dolorimeter However they are not applicable to Chronic Pain and seen as barbaric today. The scale used was the 'Dol', also barbaric. I use it below as example for lack of a different scale, which is needed. Do 2 + 2 Dol's equal 4 Dol? No one knows. This is the type of thing that needs dealt with in a true direct objective measurement of pain.

Lets simplify the problem to something ever Human understands, Hunger.

Hunger is a type of pain. There is currently no way for me to know by any objective measure that you are hungry, or how hungry you may be on an objective scale.

So rather that starting with Chronic Pain start with something simpler such as finding a way to objectively measure hunger. That work will lead to ways of measuring more complex types of pain. It may even interest the food industry to get research dollars. 'Our Health Food lowers your Dol Hunger level by 1.2 Dols compared to Processed Foods of only 0.7 Dols.'

On page three 'Treatments that are ineffective…need to be identified and heir use curtailed or discontinued.' Everyone agrees that the people with Chronic Pain are a vulnerable group that is preyed up on by the unscrupulous.

However exactly what a 'Treatment' consists of is problematic. No one wants to see the Government regulating things out of existence with burdensome regulations and approval fees, like Vitamins and Minerals, Homeopathy, Bach Flower Remedies, or Soap (Yes Soap, a recent proposed law wants to regulate people making soap, this clearly falls into the To Much Government category) etc.

There are currently standard lines of treatments such as Chemotherapy that have dubious levels of documentation to show their long term benefit. All levels of therapy need to be treated equally and fairly.

On page four under 'Disparities' Karen addressed this in something she wrote before her suicide:

====

Random Chronic Pain Thoughts

March 2nd, 2011 at 10:36am

I [Karen Shettler Paddock] am the author of the following:

Regardless of the cause of chronic pain, certain themes emerge. Chronic pain affects the physical, mental, emotional, and spiritual aspects of ones life. Chronic unrelieved pain causes impaired activities of daily living, changes in mood, decreased involvement in social activities, impairs function, leads to depression, anxiety, causes feelings of hopelessness and despair, and can result in suicidal behavior.

You learn who are your true friends. Many people are supportive in the beginning. As time goes on, most of those people reject you. Only true friends last.

Chronic unrelieved pain steals your future, your ability to hold a job, and your health insurance (if tied to your job.)

People that have not experienced severe unrelenting pain for months or years expect you to suck it up and continue your normal daily activities.

Chronic pain makes you feel alone. Like no one understands how much pain you are in. [Sadly prophetic about suicide.] ===

On page nine, 'Levels of care'. Diet is far more important than anything else. We are what we absorb from our diet and he environment. Food sensitives can manifest as Chronic Pain. Sensitivities to the Night Shade family of plants, common in our western diets, can manifest as Lupus or Rheumatoid Arthritis symptoms among others as one example.

Page eleven and several other pages talk of miss-use of prescription pain medication. There is currently a tragic war going on against Chronic Pain patients. The DEA has doctors and pharmacists so scared of losing their licence that they are refusing to fill valid prescriptions. This is said to be being done to reduce the number of overdose deaths. That rings hollow. As when the Chronic Pain patient can not get their pain medication they seek relief by the only avenues left available, street drugs like Heroin or Alcohol. Which in the end actually raises the death count and the costs to society.

Page 22 'Development of a framework for measuring…' The word 'objective' is missing.

Page 31. '…there is a need to increase the rate of drug discovery…'. Yes. However other methodologies such as eledctrotherapy also need their rate of discovery increased. Rarely is Chronic Pain caused by a drug deficiency.

Footnote #27 on page 31 talks about wight. Frequently a problem however it is often an excuse used by doctors to not do anything to help the patient with Chronic Pain.

Page 32. Chronic Pain, and most other, patients need access specialist without unneeded visits to their PCP just to get approval to see the specialists.

Page 33. 'compiled across networks' raises privacy concerns. Government and Industry have not had a good track recored of securing patient data.

Page 35. '…Identify high cost providers…' [by computer algorithms]. Lacks objectivity to the patients benefit. The highs cost provider may be supplying the best level of care. Just as the opposite may be true.

Page 37. 'cultural bias'. There is a significant gender bias when it comes to Chronic Pain. For unknown reasons Females are more prone to Chronic Pain. However many doctors write off this pain as 'Emotional Females' or monthly hormonal issues. Males do not suffer from this bias.

Page 41. Reviewing the general populations view of pain seems of little benefit. Simply spend sometime reading any of the Chronic Pain groups on Facebook. The general attitude of the population that has never experienced Chronic Pain is: You are lazy. You are doing this to get attention. You are doing this to get drugs. Karen heard those all and more. Spending some time in such groups to understand their day to day suffering is a humbling experience.

Several places the FDA is mentioned. Few people with Chronic Pain trust them especially those that have been inured by Fluoroquinolone antibiotics (FQs). These 'antibiotics' are a significant cause of Chronic Pain that is not recognized officially.

Nearly 67 pages of warnings and this stuff is allowed to stay on the market and allowed to be given out by doctors like candy:

http://www.levaquin.com/sites/default/files/pdf/levaquin.pdf

http://www.fda.gov/downloads/Drugs/DrugSafety/ucm088619.pdf

In an unscientific poll very few people had actually seen such warnings. When they did they questioned their doctors whom gave answers such as “those don't really happen”, “those are so rare you do not need to worry about them”.

An example coming from the FDA:

“FDA Fails to Act on Dr. Bennett’s SONAR Psychiatric Petition” – http://www.myquinstory.info/fda-fails-to-act-on-dr-bennetts-sonar-psychiatric-petition/

“…mitochondrial toxicity Citizen’s petition (Docket #FDA-2014-P-0856) is based directly on the April 17, 2013 FDA report. The response to this petition sent December 2014 states the FDA would not take action at this time because the Citizen Petition requires 'extensive review and analysis by Agency officials.' Since the petition is based on the FDA’s own words, from the FDA’s own research, outlined in the FDA’s own report, what the FDA is saying is that Agency officials have to review and analyze what the Agency officials themselves wrote. This is ridiculous.”

See also: http://www.myquinstory.info/fluoroquinolone-community-goes-to-the-fda/

“More than 3,000 people have died after taking one of these antibiotics and hundreds of thousands of people have been damaged by these antibiotics, according to the FDA’s own MedWatch data.” – http://www.myquinstory.info/please-help-fluoroquinolone-congressional-hearing-request/

Karen was one of those injured. She spent a YEAR crawling around the house because of these drugs damaging her tendons. This tendon damage caused Chronic Pain.

~~DISCUSSION~~