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Jumat, 30 Juni 2017

Unscrupulous Neuropathy Cure Criminals


Today's article from sciencebasedmedicine.org (see link below) may be one of the longest this blog has ever posted but it's also one of the most important and reflects widespread disquiet at the mushrooming number of clinics, courses and conferences that claim to be able to cure your neuropathy problems...at a price!! We are living with a disease for which there is no current cure of any kind. The best we can hope for is a reduction of the severity of the symptoms and even then we have to try out many drugs before we find one that will do just that. Little wonder that people become desperate and grab at straws and lurid headlines claiming to solve your health problems and also little wonder that there are thousands of con-artists and criminals who are prepared to part you from your money for very little result, if any. This article is full of specific examples regarding specific practices but it may just be the tip of the iceberg. Reading it may open your eyes to the pressures from unscrupulous dealers that are upon us and hopefully persuade you to avoid them like the plague!

The Straw Protocol: A Chiropractor’s Aggressively Promoted Neuropathy Treatment
 Posted by William M. London on February 27, 2015 

Full-page ads promoting free dinner seminars addressing the topic of “Non-surgical, drug-free approach to relief from Peripheral [sic] Neuropathy [sic]” appeared last year on at least nine Sundays in the main news section of the print edition of The Los Angeles Times. The seminars were scheduled at various restaurants in Orange County, Los Angeles County, and Inland Empire.

The Los Angeles Times claims a Sunday circulation of 962,192 and a readership of two million for the Sunday main news section. The cost of full-page ads in the main section of Sundays varies, but I was given a quote of $32,500 by an advertising consultant for the paper.

The ads included on their upper left, in small print, the words “HEALTH TODAY” and on the same line—though perhaps less noticeably—at the far right of the page the word “ADVERTISEMENT.” In a much larger font was the headline:

Do You Suffer from One Of These Seven Symptoms Of This Often Misdiagnosed Problem?

It was followed by this subtitle:


Tens of Millions Suffer And Often Don’t Know Where to Turn

The ads indicated that discussion at the seminars would include:

What REALLY causes Peripheral [sic] Neuropathy [sic]
Three crippling effects of Neuropathy [sic]
Dangers associated with medications
The Straw Protocol, which utilizes proprietary treatment methods and provides outstanding results for people who suffer from Neuropathy

The ads warned that seating at the dinner seminars would be limited and instructed readers to call for a reservation and to provide the RSVP code in the ad (apparently to enable the marketer to keep track of where each caller found out about the seminars). Next to the toll-free number provided in each ad was the name of the advertiser: OPTIMAL HEALTH, and then below it in much smaller, easily overlooked print: Straw Chiropractic. Keeping the print small for the word chiropractic is a clever promotional tactic; many prudent consumers would not be inclined to seek chiropractors for peripheral neuropathy treatment.

I called the advertised phone number, but since I said (honestly) that I didn’t have any of the seven symptoms of neuropathy listed in the ad, I would not be permitted to attend any of the free dinner seminars. (I was disappointed to not qualify for a free dinner since I’m on a tight budget just like many other critics of health pseudoscience who get falsely accused of being paid off by Big Pharma.)

However, the ad offered a second phone number to call in order to obtain more detailed information and answers to common questions about the Straw Protocol without a having to indicate one’s symptoms and attend a seminar. I called the number, 888-858-9291, and left a message with my name and address along with a request that the advertised “Free special report and DVD” be mailed to me. The materials arrived a few days later.


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The promotional DVD

The title on the label of the DVD is “Our Patients Speak” followed by “The Neuropathy Treatment Center by Optimal Health Straw Chiropractic.” On the left side of the label is the instruction: “Call Today for a FREE Consultation and Evaluation!” (The exclamation mark here is a strong signal of hype.) On the right side of the label, it exclaims “$249 Value!” I guess that’s supposed to be the value of the consultation and evaluation rather than the value of the DVD.

On the bottom of the label is a number to call to find the location to find the nearest location of the Neuropathy Treatment Center. I called and was told there are five locations. Three are in Los Angeles County: Glendale, Placentia, and Gardena. The other locations are in Corona (Inland Empire) and Lake Forest (Orange County). I learned from the website of the practice, optimalhealthsc.com, that there is also an “affiliated practice,” Restore Medical Group Greathouse Chiropractic Inc., with locations in San Diego and Sunnyvale.

The DVD plays for just a few minutes and consists of five neuropathy patients expressing satisfaction with treatment from the Neuropathy Treatment Center and dissatisfaction with medications previously prescribed for them from other doctors. Many people can be persuaded to try treatments based on such testimonials, but testimonials regarding clinical benefits are not trustworthy. Consumers often fail to consider that the experiences described in testimonials may poorly represent the experiences of most people who try a new advertised treatment. If the patients actually experienced relief from their neuropathy while they were receiving Straw Protocol treatment, it doesn’t necessarily mean that the relief is attributable to the treatment. And it’s important to recognize that some chiropractors who have solicited testimonials from patients have been found to provide incentives and/or discounts to patients who offer testimonials.

The cover letter for the mailing comes with instructions to watch the enclosed DVD before reading the enclosed special report. Advertisers recognize that this sequence tends to make their messages more persuasive. It’s likely that people tend to be less suspicious of information provided in literature after they have been exposed to relatable role models who appear sincere while offering encouraging stories.


The special report

The tabloid layout of the report reminds me of the many advertising mailers made to look like health newsletters that are sent to people who get on mailing lists of quacks. I wrote about such “Advertising Mailers in Disguise” in 2001 when I served as president of the National Council Against Health Fraud, Inc.

The front cover of the report is made to look official with the words “Optimal Health’s” in the upper left-hand corner, “Summer 2014” in the upper right hand corner, “Natural Health Journal” as a heading, and “Practical Solutions for Optimum Health & Healing” as a sub-heading. The rest of the cover shouts out its hype with lots of bold lettering, enlarged lettering, varied font styles, varied colored lettering, all-caps, italicized lettering, exclamation points, a photo of an older woman along with a quotation that supposedly comes from her, and a concluding sentence in title case. Here’s the text:

A REVOLUTIONARY new way of treating peripheral neuropathy can help you throw away your pills and…

“KISS YOUR PAIN & NUMBNESS GOODBYE”
BANISH THE NUMBNESS!
Sleep restfully without tossing & turning or stabbing and shooting pain waking you!
End those weird ‘skin-crawling’ feelings!
No more limitations on your activities!
Regain your good balance!
Live the life you deserve!

“I now have feeling in my feet that I have not felt in over twenty years!!”

Thousands Have Already Experienced This Advanced Method of Treatment and Found Freedom From The Vise-Like Hold Neuropathy Had Over Their Lives!

See Inside [along with a curved arrow as a guide to turn the page]


I suggest that health consumers should be wary of tabloid-style messages telling patients they can have their greatest hopes realized from a supposedly REVOLUTIONARY treatment.

The inside of the report consists of eight pages (page 2 through 9) along with a back cover offering tabloid-style hype similar to what appears on the front cover. Page 2 consists of a letter to the reader that indicates the treatment protocol “has already helped more than 3000 people over the last three years!” In an attempt to overcome any reasonable skepticism, the letter includes this paragraph:

This is neither far-fetched [sic] hope nor over-the-top hype like you’ve seen thrown around by ‘Miracle Pill” hucksters.

Well, I’ll be the judge of that. And so will you if you read on.

Page 3 consists of three testimonials and an introduction to “Dr. Phil Straw, D.C.” (I previously pointed out in my discussion of the supposed experts interviewed in the execrable first part of the video “The Quest for the Cures…Continues” that it’s a bad sign when practitioners are introduced redundantly with “Dr.” before their names and a degree after their names.)

I learned that Dr. Straw is the author of the 2014 book Neuropathy: How to Relieve Foot Numbness, Tingling, Burning, and Cramping Without Drugs or Surgery, he earned his “under-graduate [sic] degree from the University of California Santa Barbara in 1988 and doctor [sic] of Chiropractic in 1995” (from an unidentified institution, but clearly not UCSB), that he’s a “[s]ought-after speaker on peripheral neuropathy and the importance of maintaining optimum health through natural medicine and proper nutrition” (and I would be similarly sought-after if I also offered free dinners with my free seminars), and that he’s the “Creator of THE STRAW PROTOCOL.”

By the way, I am following THE LONDON PROTOCOL in writing about THE STRAW PROTOCOL (and you are supposed to be very impressed indeed by the capital letters in the name of my protocol).

Part of THE LONDON PROTOCOL is to check for disciplinary actions against practitioners who advertise aggressively. I found that, in November 2012, California’s Board of Chiropractic Examiners issued a citation to Philip Arthur Straw for his advertisements and Straw paid his fine in full.

I contacted a staff member serving California’s Board of Chiropractic Examiners and obtained a copy of the citation sent to Dr. Straw, which remains a public record. The section of the letter with the heading “Cause of Citation” reads:

On July 27, 2012 the Board received a complaint from N. F. alleging that the claims made in your advertisements, “Which of These Warning Signs Could Lead to Foot Amputation?” and “Don’t Let Your Neuropathy Put You in a Wheel Chair” are misleading to the public. The advertisements and your response to the Board’s Inquiry were forwarded to a chiropractic expert consultant for review. The Board expert opined that you have used worst-case clinical scenarios as headlines in your advertisements, and in doing so you have engaged in the use of misrepresentations, distortions, sensational or fabulous statements, or which have a tendency to deceive the public. In doing so, you are in violation of CCR section 311 advertisements.

In addition, the Board’s expert opined that your self-appointed designation as a “leading regional authority” and “expert” in such matters is a sensational, distorted statement that has a tendency to deceive the public. The Board expert added that the Board of Chiropractic Examiners does not recognize such expertise, and you have not demonstrated that you possess any diplomate status that might lend truthfulness to such a claim. In doing so, you are in violation of CCR section 311 advertisements.

As mentioned by Los Angeles Times business and consumer columnist David Lazarus in a column published August 25th 2014, the fine was only $500. That slap on the wrist tells you how seriously the Board of Chiropractic Examiners takes CCR section 311. Although the ads from Straw in 2014 didn’t have the same fear-mongering headlines and claims of expertise as the ads mentioned in the 2012 complaint, the claim that the Straw Protocol provides outstanding results should be viewed as a CCR section 311 violation.

Another part of THE LONDON PROTOCOL is to check for publication of clinical research findings in the scholarly literature. A Google Scholar search on “Philip Straw” revealed no such publications. No surprise! I see little reason to consider the Straw Protocol as an “Advanced Method of Treatment” as the ads in 2014 characterized it.

Page 4 of the special report consists of a brief description of peripheral neuropathy in simple language followed by criticisms of the drugs prescribed the medical community to treat peripheral neuropathy. The discussion includes the misleading suggestion that medical doctors treat peripheral neuropathy only to manage symptoms, with drugs and sometimes surgery. It disregards how standard treatment begins with addressing conditions underlying peripheral neuropathies and includes mechanical aids for symptom management. It includes a common medical establishment-bashing trope:

Perhaps the reason you may not have heard of the treatment options available for your peripheral neuropathy (like the method described on the next couple of pages of this report) is because of the stubbornly-held notion that, when it comes to medical treatments that don’t involve a needle or a pharmaceutical company’s pill, the establishment community can be ‘a bit set in their ways.’

Then again, perhaps this is a straw person (or straw establishment community) attack and the popular press has ignored THE STRAW PROTOCOL because it’s just one of the hundreds of non-evidence-based gimmicks for healing promoted by chiropractors. If there was compelling clinical research evidence indicating that the Straw Protocol is safe and the advertising claims made for it are valid, I think we would have heard about it (especially from the Straw-supported Los Angeles Times).

(A fact sheet from the National Institute of Neurological Disorders and Stroke provides a much more informative description of peripheral neuropathy than does Straw’s report. The fact sheet describes the classification, symptoms, causes, diagnostic tests, and treatment, for peripheral neuropathy.)

Pages 5 through 8 include eleven more testimonials, more hype from Dr. Straw, and a description of the four steps of the Straw Protocol (also described on Straw Chiropractic’s website).
Step 1 (Stimulate) of his protocol uses an electronic device that, we are told, has approval for a number of pain indications, but is not a transcutaneous electrical nerve stimulation device. It’s good to be wary of devices that promoters fail to identify by name. When practitioners are secretive about their treatments, they sidestep scrutiny. I’m reminded of a catchphrase of Dana Carvey’s Church Lady character: “How convenient!”
Step 2 (Rejuvenate) is to increase overall circulation by utilizing light emitting diode (LED) therapy. The description of Step 2 also includes a reference to investigations by NASA. Such references are common in the promotion of non-validated health gimmicks.

According to the BlueCross BlueShield of Tennessee Medical Policy Manual’s statement on LED therapy (reviewed most recently on 9/11/14):

Light emitting diode therapy for the treatment of conditions / diseases, including but not limited to diabetic peripheral neuropathy, lymphedema, non-healing wounds, tendonitis, capsulitis, and pain is considered investigational. (Emphasis in original.]

Investigational means not appropriately promoted in free dinner seminars to recruit paying patients. Another key point in the statement:

Scientific evidence in peer review literature is lacking regarding the use, safety, improvement or effectiveness on health outcomes for light emitting diode therapy.
Step 3 (Activate) “uses different frequencies of vibration on different areas of your body which further stimulates new capillary and nerve regeneration.” It would appear that Straw’s patients are shaken (if not stirred), but it isn’t clear that they’re pickin’ up good vibrations, excitations, or healing.

Exposure to some sources of vibration is one of many recognized causes of peripheral neuropathy. That doesn’t mean other sources of vibration provide relief. A review article published in 2015 on whole body vibration (WBV) for rehabilitation of peripheral neuropathies concluded:

The results of this literature search suggest insufficient evidence to assess the effectiveness for the effects of WBV on neuropathic pain, muscle strength and balance in patients with peripheral neuropathies, as there is a clear lack of methodologically high quality research on the subject.

In other words, WBV is a non-validated treatment.
Step 4 (Empower) is described as “truly THE KEY to not only reaching your desired level of pain-free health, but staying there for as long as you like.” It amounts to “nutritional education and proper supplementation” against chronic inflammation.

Inflammation is a complex bodily response to infection and injury that can be either beneficial or harmful. While chronic inflammation appears to play a role in the development of some chronic diseases, it is unclear that any special supposedly anti-inflammatory regimen of foods and dietary supplements can provide clinically-significant relief to peripheral neuropathy patients.

Dietary supplements are frequently tainted with drugs and often do not contain ingredients in doses listed on their labels. Paying more for practitioner-recommended (or -dispensed) supplement formulations provides illusory assurance.

On page 9 of the report is this pitch (bolding in original):

If you call and schedule your appointment for your own exam within 7 days of receiving this package, I will waive the entire $249 fee for you.

It’s followed by an offer of a free copy of Straw’s book at the exam.

I didn’t call within seven days. Soon after I received a letter from Straw Chiropractic renewing the offer for the free exam if I called within two to three days and the book would still be available for me.


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After failing to make the second deadline, I received a second notice which began “Hello…?” followed by a letter beginning with the words: “You’re smart. I can tell.” The letter went on to express surprise that I hadn’t called. The free diagnostic exam offer was still available along with the free book, but “is just not going to be an option for very much longer.” The letter came with a flyer featuring eleven more testimonials. 




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I waited for months to call to find out about costs of the Straw Protocol. The initial free exam and consultation offer was still available. 


Costs to patients

Consumers should be wary of high-pressure sales pitches for limited time offers. Practitioners who place full-page newspapers ads need to work hard to get patients into their clinics. They need to recoup their investments in advertising (e.g., newspaper ads) and direct selling (e.g., dinner seminars) and then earn enough from fees charged to patients to make good money.

I reached a sales representative over the phone for Straw Chiropractic and was told that if I were a candidate for the treatment (that I really had peripheral neuropathy and it wasn’t too advanced), it would cost me $500 to $10,000 for five to fifteen weeks of treatment. Insurance doesn’t pay for any of the treatment. The representative wasn’t sure whether the quoted figures include the cost of purchasing dietary supplements.
Advertising in 2015

Thus far in 2015, in some, but not all Sundays, ads of varying sizes for the Straw Protocol have appeared in the main section of The Los Angeles Times. The most recent advertisements (as of this writing), on February 15th and 22nd were smaller than a quarter of a page and included an invitation to call for the free DVD and report. None of the newer ads included invitations to free dinner seminars.

However, I noticed on another page in the main section of the paper a half-page ad for free dinner seminars from the NEUROPATHY RELIEF CENTER of Long Beach Presented by Ballerini Chiropractic. The pitch is very similar to the pitch used by Straw Chiropractic. I will need to investigate further to find out the source of marketing campaigns used by chiropractors to promote peripheral neuropathy treatments services.


Other chiropractors who promoted free dinner seminars

Dr. Straw’s marketing campaign featuring free dinner seminars reminds me of similar recent campaigns by other chiropractors. For example, as I described previously:

[Brandon Lee Babcock, D.C.] pitched a bogus nutritional cure for diabetes. But, as reported December 9th, 2013 by The Salt Lake Tribune, his scheme bilked older adults in Utah of thousands of dollars. To recruit patients, he offered free gourmet dinners where attendees were shown video testimonials and given information about Babcock’s supposed “diabetes breakthrough.” He tricked patients into signing papers that established lines of credit with Chase Health Advance and he maxed out the $6,000 limit when patients tried to withdraw from his services. Some patients testified that Dr. Babcock and his staff misled them into signing up for credit without their knowledge or consent. Others said Babcock refused to provide refunds despite a 30-day opt-out guarantee and a promise of 100% satisfaction.

In 2008, the Utah Department of Occupational and Professional Licensing (DOPL) issued a “non-disciplinary cease-and-desist order” after finding that he advertised treatments for conditions he wasn’t qualified to treat: depression, multiple sclerosis, fibromyalgia, learning problems, attention deficit disorder, allergies, hormone replacement relief, sleep problems and memory loss.

In April 2012, the DOPL suspended Babcock’s chiropractic license by emergency order. In August 2012, West Jordan City revoked Babcock’s business license. The Salt Lake Tribune noted, however, that he continued to lead seminars promoting his program to reverse Type II diabetes.

In October 2013, a jury convicted him of six third-degree felony counts of exploiting a vulnerable adult. In December 2013, he was sentenced to six months in jail.

Colorado-based chiropractors Brandon Credeur, D.C. (a classmate of Brandon Babcock at Parker College of Chiropractic) and his wife Heather Credeur, D.C. also used newspaper advertising to attract diabetics to seminars following free gourmet dinners to promote their “functional endocrinology” treatments to diabetics and people with symptoms of low thyroid function. Jann Bellamy has discussed both Babcock and the Credeurs previously on ScienceBasedMedicine.

A September 2011 complaint from Colorado’s Board of Chiropractic Examiners against Brandon Credeur charged him with violations of the Board’s rules regarding scope of practice; misleading, deceptive, false, or unethical advertising; untrue, deceptive or misleading practices regarding unproven and/or unnecessary services; and record keeping requirements. But instead of losing his chiropractic license, as many of his former patients had hoped, following a hearing in an administrative court room, Credeur’s case ended in a settlement in which he admitted to nothing and agreed to keep better records.

On June 19th, 2013, the Colorado Medical Board sent an order to Brandon and Heather Credeur to cease and desist practicing medicine without a license. That same day, they declared bankruptcy to the dismay of former patients who have sued them to get their money back. A ruling from an administrative law judge is anticipated in response to the Credeur’s challenge to the Medical Board’s order.

The Credeurs remain licensed to practice chiropractic in Colorado.

Candice McCowin, an Irvine, California chiropractor ran newspaper ads claiming breakthrough treatments for diabetes and other chronic illnesses to be discussed at free dinner events. In March 2014, the California Board of Chiropractic Examiners cited the “free diabetic guides” she distributed as misleading ads. As noted in a column by David Lazarus, “McCowin paid a $500 fine and agreed to ensure that future ads ‘not be construed as misleading or deceiving to the public.” Dr. McCowin, I will be looking for your ads.
A few final thoughts

Advertisements that appear in The Los Angeles Times (or any other newspaper) should never be presumed to be trustworthy. The screening processes used by advertising departments of news organizations are typically inadequate to assure that ads are not false or misleading.

The $500 fine for “advertising in a potentially deceptive manner and for portraying himself as a neuropathy expert” that Dr. Straw paid in 2012 was no serious deterrent. I consider recent advertisements by Straw Chiropractic in newspapers and in mailers to patients to be misleading.

The direct selling approach of free dinner seminars and free initial consultations can be seductive. People often respond to acts of apparent kindness and generosity with a sense of obligation to reciprocate. But reciprocation to a sales pitch for a non-validated treatment protocol is unlikely to lead to relief and is likely to be costly.

I don’t expect that licensing boards in California are inclined to take appropriate action to protect consumers from inappropriate advertising of health services. But consumers need to file complaints and they need to let legislators know that they object to practitioners who deceptively advertise health services for financial gain and to licensing boards that fail to adequately protect the public.

William M. London is a professor of public health at California State University, Los Angeles and a co-author of the sixth, seventh, eighth, and ninth (2013) editions of the college textbook Consumer Health: A Guide to Intelligent Decisions. He is one of two North American editors of the journal Focus on Alternative and Complementary Therapies, associate editor of the free weekly e-newsletter Consumer Health Digest, and co-host of the Credential Watch site. Most of his recent writings about extraordinary claims for health products and services can be found at Swift, published by the James Randi Educational Foundation, and the Skeptic Ink Network.

http://www.sciencebasedmedicine.org/the-straw-protocol-a-chiropractors-aggressively-promoted-neuropathy-treatment/

Minggu, 11 Juni 2017

Stop Searching For A Nerve Pain Cure And Begin Learning To Live With It


Today's interesting post from healthskills.wordpress.com (see link below) is an impassioned and intelligently written plea for doctors to start aiming their treatment (at least partially) at learning to live with pain instead of constantly trying to 'cure' it with chemicals. Now nobody knows better than the average neuropathy patient, that chemical treatments almost never take neurological pain away completely. We're well aware that the pills we take are doing nothing to improve our nerve damage and at best provide a sort of security blanket that masks the pain. That security blanket then becomes something we rely on to get us through the day but its side effects can severely affect our well-being and sense of self. Pain is an experience not a disease. Pain is just pain and doesn't mean that the problem is getting worse, so why can't we learn better to accept it for what it is and manage it in such a way that it becomes part of our daily lives. Stop trawling through drug lists in the search for pain reduction and begin learning to manage it. That begins by accepting that the pain is there; every day and maybe for the rest of our lives. It's not a threat; it's just an experience and by using the proper management techniques we can probably put up with more pain than we think we can - now that would be an achievement in itself! Try not to dismiss the idea because pain is so entrenched in your life and try to be open to change. All that said, I too live with daily pain and I too take the drugs to dampen it but I wish I didn't, so if there are effective methods to learn to live with it and reduce its importance, bring them on! For that, we need doctors who are willing to say:' less pills, better management and here's how.'
 


Deciding when to say when: pain cure? or pain managed?
Bronwyn Thompson, PhD, MSc (Psych) 1st Class Hons, DipOT, Registered Occupational Therapist 

I think the subject of this post is the singularly most important yet neglected topic in chronic pain research today. When is it time to say “All this looking at pain cure, or reducing your pain isn’t working, it’s time to accept that pain is going to part of your life.” It’s difficult for so many reasons whether you’re the person experiencing the pain, or the clinician trying to help. It’s also incredibly important for everyone including our community.

Cures for pain that persists are not easily found. One possibility is that the underlying disease or dysfunction has not yet been treated – pain in this case is the experience we have when there’s an unresolved threat to body tissues. Find the source of the problem, treat it, and voila! No pain.

Another possibility is that a new or groovy treatment has been developed – something extraordinary, or something that’s being applied to a different problem or something that’s emerging from the experimental phase to clinical practice. This means clinicians need to have heard about it, maybe will have had to think hard about their clinical reasoning, have developed skills to apply it, and be ready to talk about it with the person they’re treating.

In the case of much chronic pain, pharmacological approaches simply do not work. Machado and colleagues (2009), in a large meta-analysis of placebo-controlled randomised trials, found 76 eligible trials reporting on 34 treatments. Fifty percent of the treatments had statistically significant effects, but for most the effects were small or moderate … the analgesic effects of many treatments for non-specific low back pain are small”, while Machado, Maher and colleagues found that paracetamol was “ineffective” for reducing pain intensity or improving quality of life for people with low back pain, and although there was a statistically significant result for paracetamol on osteoarthritis pain (hip or knee), this was not clinically important (Machado, Maher, Ferreira, Pinheiro, Lin, et al_2015). Clifford Woolf said “most existing analgesics for persistent pain are relatively ineffective… the number of patients who are needed to be treated to achieve 50% reduction in neuropathic pain in one patient is more than four – a high cost for the three unsuccessfully treated patients and their physicians” (Woolf, 2010).

Woolf’s sentence ends with an important statement: A high cost for the three unsuccessfully treated patients and their physicians. I have emphasised the final three words, because this might be the most difficult to process. It’s hard for clinicians to say “I can’t reduce your pain”, and “there isn’t a cure”. It’s incredibly hard. And it’s perhaps because it’s so hard that I’ve found very little published research looking at the way clinicians go about telling people their pain is likely to be ongoing. It’s like a taboo – let’s not talk about it, let’s pretend it doesn’t happen, after all it doesn’t happen often. Really?

Amongst allied health (I can’t bear to use the word “non-medical”), and in particular, physiotherapists, there continues to be a push to address pain intensity and (ultimately) to cure pain. Innovative treatments such as mirror therapy, graded motor imagery, therapeutic pain neuroscience (we used to call it psycho-education in the 1980’s when I first started working in this area), reducing the threat value of the experience have all come into their own over the past 15 years or so. Even long-standing pain problems apparently respond to these approaches – people cured! Who wouldn’t be keen to try them?

Most of these latter treatments are based on the idea that our neurology is plastic; that is, it can change as we change input and thoughts/beliefs about what’s going on. Unfortunately, the systematic reviews of trials, and at least one “real world” trial of graded motor imagery haven’t shown effects as great as promised from the early research (eg Johnson, Hall, Barnett, Draper, Derbyshire et al, 2012). There are sure to be people who can point to amazing outcomes in the people they treat. I’m certain that it’s not just the “treatment” but an awful lot to do with the person delivering the treatment – and the treatment context – that might make a difference to outcomes.

But where this all leads me to is who makes the decision to stop chasing pain reduction and pain cure? When does it happen? What’s the process? And what if we treatment providers are actually prolonging disability out of the goodness of our hearts to find a cure?

Let me unpack this a little.

In my research, several important factors led to people deciding to begin flexibly persisting (and getting on with life as it is, not as it was, or might be).
The first was knowing the diagnosis and that it would not be completely cured but could be managed.
The second, that hurting didn’t mean harm (pain is just pain, not a sign of ongoing damage).
The third, that there was something important the person wanted or needed to do to be themselves.

There were other things as well, like having a clinician who would stand by the person even if the person didn’t “do as the Doctor ordered”, and developing their own personalised model or explanation for their pain as it fluctuated from day-to-day. BUT the single most important factor was knowing that the problem needed to be managed because there was no cure. Knowing this meant that energy used chasing a cure was redirected towards learning to live well and be the person they were, rather than a patient or being dominated by pain.

Unfortunately, I think that many clinicians confuse the idea of managing pain with that of resignation to a lesser life. Even the wonderful Lorimer Moseley and crew wrote recently that “CBT literature seemed to focus on this idea of ‘pain is now unavoidable so it is now time to learn how to cope with it.’ He goes on to argue that because a CBT approach focuses on thoughts and beliefs (much like Explain Pain does), it’s not incompatible with the idea that the plastic brain can learn to reduce the threat value even further to ultimately “helping them live well with less pain, or perhaps without any pain at all.”

Here’s my concern: Right now there are many people living with chronic pain who have lost their sense of hope. They’ve pursued pain cure after pain cure, and in doing so, they’ve lost normal routines and habits, lost their usual occupations (activities), stopped being around people, stopped working, and have suffered in the true sense of the word – they’ve lost their sense of self. While I applaud the efforts of researchers like Moseley and colleagues, and I think we must continue to seek treatments to reverse the neurobiological underpinnings of pain, at the same time I think we need to look at the psychological and social aspects of our attitudes and expectations towards experiencing pain. And we must think of the negative effects of our emotional response to seeing another person who is experiencing pain.

Is it so terrible to experience pain every day? Speaking as one who does – despite my knowledge of neuroplasticity – my pain doesn’t represent a threat. It’s just an experience. It’s there. I notice it, I can feel it. And the participants in my research similarly acknowledged pain as present – but it didn’t have the emotional primacy that pain can represent before it is explained. In fact, some of the participants said they’d learned important things because they’d had pain. A lot like having a mood disorder (that must be managed), or diabetes (that must be managed), or heart disease (that must be managed), or respiratory disease (that must be managed), perhaps it’s OK to have pain – that must be managed. Because until our research has advanced a LOT further than it has, there are an awful lot of people living with chronic pain, and who will continue to live with chronic pain. And even more sadly, there are an awful lot of people who don’t even get the opportunity to know that it’s possible to live well despite experiencing chronic pain because we (as part of society) still don’t accept that pain can be present without it being a threat.

Sometimes I wonder at our (clinicians and researchers) blind spot. We just don’t seem to be ready to accept persisting pain as something that can be lived with. Is it time to look at our own discomfort with allowing pain to be part of life?

Sources

Bowering, K. J., O’Connell, N. E., Tabor, A., Catley, M. J., Leake, H. B., Moseley, G. L., & Stanton, T. R. (2013). The effects of graded motor imagery and its components on chronic pain: a systematic review and meta-analysis. Journal of Pain, 14(1), 3-13.

Cossins, L., Okell, R. W., Cameron, H., Simpson, B., Poole, H. M., & Goebel, A. (2013). Treatment of complex regional pain syndrome in adults: a systematic review of randomized controlled trials published from June 2000 to February 2012. European Journal of Pain, 17(2), 158-173.

Johnson, S., Hall, J., Barnett, S., Draper, M., Derbyshire, G., Haynes, L., . . . Goebel, A. (2012). Using graded motor imagery for complex regional pain syndrome in clinical practice: failure to improve pain. European Journal of Pain, 16(4), 550-561.

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https://healthskills.wordpress.com/2015/07/27/deciding-when-to-say-when-pain-cure-or-pain-managed/

Kamis, 12 Januari 2017

HIBISCUS CURE DIABETES NATURALLY



Diabetes has become a common disease these days just like any other whacky flu, cough and cold. Life is certainly not easy for a diabetic as one has to maintain a healthy lifestyle throughout, since there is no cure for the disease.
Offering a new hope to diabetics, researchers at Assam's Tezpur University and West Bengal's Visva-Bharati University have derived that natural extracts from a particular species of the hibiscus plant can help in curing diabetes.
Researchers collected samples of hibiscus leaves from North-East region and conducted tests on diabetic rats. The results showed that a phytochemical (plant-derived compound) from the leaves of Sthalpadma or land-lotus (scientifically known as Hibiscus mutabilis and commonly called Confederate rose) restore insulin levels better.
Samir Bhattacharya, emeritus professor, School of Life Sciences (Zoology Department) at Visva-Bharati in Shantiniketan was quoted saying to a news agency: “We found that ferulic acid (FRL), belonging to the polyphenols, extracted from leaves of the plant, has the potential to be a better therapeutic agent for diabetes”.
According to the World Health Organisation, there are about 346 million people worldwide with diabetes, with more than 80% of deaths occurring in developing countries. India has nearly 63 million diabetic patients, with the situation becoming grimmer mainly because of the sedentary lifestyle prevailing across key metros and big cities aggravating the situation. According to a study conducted by the International Diabetes Federation (IDF), the number of Indians suffering from this malicious disease is expected to cross the 100 million mark by 2030.
The findings were published in Biochemical and Biophysical Research Communications journal August 26.

Selasa, 20 Desember 2016

How far away is a cure for HIV


This blog concentrates on HIV in combination with neuropathy and therefore, rarely posts about HIV on its own. However, today's video is of such general interest for all HIV-positive people that for once, straying away from the core topic can be forgiven. You can suffer from neuropathy without having HIV but for most of us, HIV is at the basis of whatever medical problems we have and as such, learning about progress towards a cure can only be of value. The truth is that, for whatever reasons, a cure for HIV is not around the corner; this video helps us understand why.




The following is the text that accompanies the video on YouTube:

What Can We Do Now to Speed Up HIV Cure Research?

After attending a meeting sponsored by several organizations (TAG, AMFAR, Project Inform, the AIDS Policy Project) in Baltimore on April 20-21 this year, I came to the realization that we needed a video that would wake people up to the challenges ahead of us to get to a cure of HIV that is accessible and practical. As most of you know, the case of Timothy Brown (aka The Berlin patient), a person who got cured of HIV and leukemia 5 years ago, has jolted a new energy and hope in the search for the cure. But most people with HIV, policy makers and potential funding sources are not fully aware of this case and what the new movement for a search for a cure are all about. So, I decided to travel around the country to interview key players in advancing this field to make a short video that could serve as a catalyst for awareness and change. This short video, done with a very low budget with the help of my activist friend Greg Fowler, is only part of a longer, more detailed documentary to be finished before World AIDS Day this year, the 30 year anniversary of the first AIDS cases. Please watch it and forward it to your friends. Please follow the suggestions made in that video and become part of the cure! Everyone can do something now to raise awareness and funds not only for research but also for advocacy and education in this important new and expanding area. I hope I can count on you.

--Nelson Vergel