Saturday, September 22, 2012

PENE: An explanation of the ICC term

PENE: An explanation of the ICC term
http://me-advocacy.com/PENE_An_explanation.html

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PENE: An explanation of the ICC term



PEM was once the abbreviation for the cardinal feature of ME, which is a
global exacerbation of symptoms following minimal amounts of cognitive
or physical activity.
"exhaustion unrelated to an excessively demanding schedule that would
induce fatigue in an otherwise healthy adult."


(PEM according to Reeves et al. 2003)
http://www.biomedcentral.com/1472-6963/3/25



Several groups including the CDC however have manipulated the term and
there are now several versions in use which can be used in conjunction
with other well known criterias.

The latest is from the International Consensus Criteria (ICC) for ME and
is abbreviated to PENE.

"A. Postexertional neuroimmune exhaustion (PENEpen'-e):Compulsory
This cardinal feature is a pathological inability to produce sufficient
energy on demand with prominent symptoms primarily in theneuroimmune
regions.
Characteristics are as follows:

1. Marked, rapid physical and ⁄ or cognitive fatigability in response
to exertion, which may be minimal such as activities of daily living or
simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation: e.g.acute flu-like symptoms,
pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be
delayed by hours or days.
4. Recovery period is prolonged, usually taking 24h or longer. A relapse
can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina)
results in a substantial reduction in pre-illness activity level."

(International Consensus Criteria for ME, 2011)
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract



To meet thefull ICC for ME, the authors of the criteria have said that a
person must have PENE.
So it is important that thisfeature be accurate
to the disease ME when used for research purposes orclinical diagnoses.
Specificallyit is not the meaning of the letters PENE that is important,
but the actualdescription where we discover the truth about this term.



PICKING THROUGH THE CRITERIA FOR PENE


"This cardinal feature is a pathological inability to produce
sufficient energy on demand"



Firstly PENEis said to be an inability to produce enough energy when
needed. This is commonin people who are deconditioned or depressed.
Therefore this is not unique toME patients and would not separate them
from those people.

Next the authors list several characteristics of PENE, but none are said
to be required for PENE, and as we will explain they are also not
actually the landmark feature that ME patients experience.


"1. Marked, rapid physical and ⁄ or cognitive fatigability in
response to exertion, which may be minimal such as activities of daily
living or simple mental tasks, can be debilitating and cause a
relapse."


Number 1 is a quick fatigability after activity. This is the same as
the initial description and again applies to deconditioned or depressed
people.


"2. Postexertional symptom exacerbation: e.g.acute flu-like symptoms,
pain and worsening of other symptoms."


Number 2 is exacerbation of symptoms. This is not however a global
exacerbation ofsymptoms, but allows for any symptom exacerbation. So
for instance, pain would increase for anyone who is deconditionedor
depressed, due to his or her fitness levels.


"3. Postexertional exhaustion may occur immediately after activity or be
delayed by hours or days."


Number 3 ispost activity tiredness. This is not strictly said to be
delayed, but can beimmediate, and again can be applied to deconditioned
or depressed people.


"4. Recovery period is prolonged, usually taking24 hor longer. A relapse
can last days, weeks or longer."


Number 4 isrecovery delay. This too could be applied to deconditioned or
depressed people.


"5. Low threshold of physical and mental fatigability (lack of stamina)
results in a substantial reduction in pre-illness activity level."


Number 5 is like number 1 and is lack of stamina, and again applies to
deconditioned or depressed people.


So how canPENE be the landmark feature of ME when it can also be applied
to deconditionedand depressed people?
And when it is not a global
exacerbation of symptoms following even trivial increases incognitive or
physical activity?



PENE, MELANCHOLIC DEPRESSION & THE CANADIAN CRITERIA


PENE is not in actual fact a new description. It is exactly the same as
the description of PEM used in the Canadian criteria,which also allows
people without the cardinal feature of ME to be entered into a study.
Only the words have been rearranged



"Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss
of physical and mental stamina, rapid muscular and cognitive
fatigability,post exertional malaise and/or fatigue and/or pain and a
tendency for other associated symptoms within the patient's cluster
ofsymptoms to worsen. There is a pathologically slow recovery
period.usually 24 hours or longer."

(Canadian consensus criteria, 2003)
http://www.cfids-cab.org/MESA/ccpccd.pdf



What is really portrayed by both PENE in the ICC and PEM in the Canadian
criteria is therefore a mixture of reactions by people with different
conditions in response to activity, none of which are strictly the
cardinal feature of ME.

This however will not come as a surprise to clinicians working the
field, for Leonard Jason and others (2001) have already shown that PEM
(AKA PENE) also occurs in people with melancholic depression and those
with no fatigue.
http://www.cfids-cab.org/cfs-inform/Cfspsych/jason.etal02.pdf



WHERE TO GO NOW?

A new term,PAR (post activity relapse), has been proposed by Morris and
Maes (2012) as a moreaccurate description of the feature ME patients
describe, and is not so easilysubstituted for the commonly found fatigue
after exertion. It also leaves little room for assumptionon the part of
clinicians who are yet to catch up with scientific develops inME
science.



"This section will propose an immuno-inflammatory explanation for the
hallmark symptoms of the disease,including fatigue, malaise,
neurocognitive symptoms and a range of abnormal responses to exertion
that may be delayed by 24 or even 48 h, which is often labeled as post
exertional malaise. The term refers to abnormal responses to even a
trivial increase in normal levels of physical or neurocognitive
activity.Post activity relapse may therefore be a better term. This
phenomenon is often reported by ME patients to be similar to the acute
phase of influenza, with symptoms indicating infection/inflammation,
e.g. sore throat, lymph tenderness or swelling, malaise, hyperalgesia
and brain fog. Insignificant increases in physical activity or minor
cognitive tasks may exacerbate immune dysfunction,inflammation and O&NS
thereby producing further signs of the disease. The effect may be
delayed, but is predictable and accumulative, varying in duration
dependant on disease severity and accumulative activity levels. "

(Morris and Maes, 2012)



We believe it would be to the advantage of other patients if they now
began to use this term to communicate with doctors, their family and
friends, until the biology of this feature is defined by an objective
test.


ME Advocacy
 
* * *
I do prefer the term Post-Exertional Neuroimmune Exhaustion.  Malaise always sounded vague, too much like a depressed person's lack of interest in doing anything, but neuroimmune exhaustion is to the point.

Sunday, September 16, 2012

Popular Pain Meds Linked to Hearing Loss in Women - Pain Management

 
 women who took ibuprofen or acetaminophen two or more days per week had a higher risk of hearing loss compared to women who used them less than once per week, and risk increased with frequency
 
* * *
 
During my periodic relapses when I was taking ibuprofen every day, I noticed increased ringing in my ears, sometimes loud enough to keep me awake at night or to impair my ability to hear what was said to me.  I also noticed that when I stopped taking Advil at the end of a relapse, my hearing returned to normal.
 

Anatomy of an Epidemic: The Opioid Movie - Pain Management Center -

 
 the point of the video was to explain that there were patients who could take opioids and not turn into "classic drug addicts."
 
"I would not be able to do the work I love here if I did not take the medicine," she said. "I would be lying on the bed with a heating pad."
 

Susan had tried for years to manage her pain. Some doctors thought she was an addict seeking pain pills, she said. The pain was so bad that she discussed suicide with her husband. Before finding Spanos and OxyContin, she was required to pick up one day's worth of medicine at a pharmacy each morning.

In the video, Susan said finding the right medicine made her life "wonderful again."

"I have found life again and it is worth living now. And I'm so grateful," she said.

"If Susan didn't have the painkillers, she couldn't function at all," Kevin said.

The three patients in the video who say OxyContin has helped them are worried that additional restrictions on prescribing narcotics might prevent people like them from getting the pain relief they need.

* * *

Yes, there are people with addictive personalities who should not get these drugs, but they can generally be weeded out in advance.

I spent SEVEN YEARS begging for pain pills, until I finally got a prescription for something so mild it's sold over the counter in Canada.  That took the edge off enough so I could sleep a little.  Think about that, folks, seven years of constant pain, sleeping only 2 hours a night when the exhaustion finally overwhelmed the pain, and the doctors did nothing but tell me I was imagining things, assuring me that I was sleeping more than I thought ... even on nights when I had knit a scarf or read a book to prove that I was NOT asleep.

Then I got Vicodin after oral surgery and was able to sleep 5-6 hours in one chunk.  Sleep is the great healer; after 5 years of sleeping decently, I feel almost human again, but the physical damage from years without sleep is likely permanent.  I'll never be the athlete I once was, because doctors refused to take my pain seriously.  They were more concerned that treating the pain would make me an addict than they were about getting me well enough to return to work.  And, although that medical group HAS a pain management specialist, who says "pain is what the patient says it is", you cannot go to him without a referral from another doctor in the medical group, and the only referral any of them were willing to give me was to a psychiatrist.  When I came back with a clean bill of mental health, it didn't faze them, they wanted me to keep seeing shrinks until I found one who said what they wanted to hear.

 

Muscle Weakness - Symptoms, Causes, Treatments - Better Medicine