Nonpharma = No Risk

[Ren]

I. Don't test, save money. Advise CBT and exercise.

Since some people group ME/CFS with Fibro as central pain syndromes, I wanted to note a November 2014 Medscape article. More precisely, this is a physician training tool focused on Fibro. References include Clauw and Wessely.

I believe this article/training tool, "An Army Sergeant With Mysterious Pain: Crack the Case", was written by a VA physician. I largely skimmed it, but someone who does a closer reading may see more.

From the article and of note is that doctors are advised that if they suspect Fibro, they shouldn't do further tests bc this wastes resources. They're also advised that they don't need to send Fibro patients to any kind of specialists, bc this wastes resources. Advised treatment includes trying acupuncture, if the patient is interested. And CBT and exercise.

http://www.medscape.com/viewarticle/834573?src=wnl_edit_specol&uac=211644DZ



II. Nonpharma therapies (are alleged to) have no risks.

Another Medscape article, "Aerobic Exercise 'Most Effective Weapon' for Fibromyalgia", also advises psychotherapy and exercise, termed "multi-component therapy"*. The "experts" warn against side effects of pharmacological treatments. And thus instead advise "a graduated approach" of exercise, education, and promoting "an internal lotus of control". Such therapies are promoted because:

"'Nonpharmacologic therapies have no risks,' Dr. Fitzcharles explained."

http://www.medscape.com/viewarticle/827054?src=wnl_edit_specol&uac=211644DZ

* Also consider the term "interdisciplinary rehabilitation".
http://www.effectivehealthcare.ahrq...ronic-pain-opioid-treatment-report-141205.pdf



III. Progressive treatment modalities: behavioral and physical therapy

I'm concerned that the recent P2P opioids-and-chronic-pain report will affect ME/CFS negatively, so long as ME/CFS is viewed as a chronic pain syndrome which can/should be treated in the same multimodal fashion as other chronic pain syndromes. If part of P2P is to widely distribute information, then I imagine we'll be seeing more articles such as those above.

"Several workshop speakers stressed the need to use treatment options that include a reasonable range of progressive sets of approaches that might initially include nonpharmacological options, such as physical therapy, behavioral therapy, and/or proven complementary and alternative medicine approaches...these treatment modalities..." (p.10-11)

"Therefore, best practice models for chronic pain management require a multidisciplinary approach similar to that recommended for other chronic complex illnesses... Research demonstrates that these conditions can be managed successfully using an interdisciplinary team-based approach to care (e.g., medicine, psychology, nursing, pharmacy, social work)." (p.16)

https://prevention.nih.gov/docs/programs/p2p/ODPPainPanelStatementDraft_10-02-14.pdf



IV. Chronic pain syndromes umbrella

In conclusion, I don't know anything about Fibro treatment - what works, what doesn't, what's controversial, what's not, etc.

My purpose is just to highlight that the chronic pain syndromes umbrella might be used as a kind of back door approach to push multimodal CBT/GET onto ME/CFS patients, under the guise of non-pharma therapies are great for all people with chronic pain syndromes.


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[WillowJ]

Fibro itself is controversial (to the mainstream, in a similar way that ME is but maybe a bit less so for fibro).

There are 3 prescription drugs approved, and they work for some patients but not for others (maybe not for the majority?).

Generally speaking, the thing about non-pharmacological therapies is not that there is no risk, but that most did not think it necessary to assess what the risk was:

some quickly found studies in random fields:

Well-controlled safety and effectiveness trials in patients with NVP are lacking for nonpharmacological treatments (e.g. acupressure).

http://link.springer.com/article/10.2165/00003495-200059040-00005
Mazzotta P, Magee LA. A Risk-Benefit Assessment of Pharmacological and Nonpharmacological Treatments for Nausea and Vomiting of Pregnancy. Drugs. April 2000, Volume 59, Issue 4 , pp 781-800.

In addition to relying primarily on SCDs of limited size, another limitation of the current state of research is the fact that most of the studies reviewed did not evaluate adverse effects.

http://archinte.jamanetwork.com/article.aspx?articleid=411279
Liat Ayalon, PhD; Amber M. Gum, PhD; Leilani Feliciano, PhD; Patricia A. Areán, PhD. Effectiveness of Nonpharmacological Interventions for the Management of Neuropsychiatric Symptoms in Patients With Dementia: A Systematic Review. Arch Intern Med. 2006;166(20):2182-2188. doi:10.1001/archinte.166.20.2182.



Or they may note the risk, but downplay it, apparently not having investigated the cause (they assume the cause and effect are they same, but this is not a safe assumption; possibly sedentary patients have become sedentary because they have a higher risk and therefore find exercise difficult, morso than having a higher risk because they are sedentary for no particular health-related reason ). From a cardiac study:

It should be noted, however, that strenuous exercise may itself pose a risk for sudden death in high-risk populations: e.g., patients recovering from myocardial infarction (45, 71, 109, 120). There are numerous anecdotal accounts of individuals (including trained athletes) who died suddenly during a bout of exercise. Therefore, exercise training may not be completely without risk. However, systematic studies of this paradox have been limited. Bartels et al. (9) demonstrated that the incidence of sudden death increased during a bout of exercise for both sedentary and regular exercisers, with the greatest incidence in the sedentary group.

http://jap.physiology.org/content/92/2/446.short#sec-4

Or they simply assume it is better than pharmacology without trying to check what exactly the risks are (from Diabetes), but even here they do not assume the risks are none:

Generally we can assume that lifestyle interventions incur fewer and less serious side effects than drug treatment,

http://www.bmj.com/content/334/7588/299?%3E


In ME/CFS, there is of course Tom Kindlon's review paper:

Using the CONSORT guidelines as a starting point, this paper identifies problems with the reporting of harms in previous RCTs and suggests potential strategies for improvement in the future. Issues involving the heterogeneity of subjects and interventions, tracking of adverse events, trial participants’ compliance to therapies, and measurement of harms using patient-oriented and objective outcome measures are discussed.

http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

 

[barbc56]

"'Nonpharmacologic therapies have no risks

,'

This idea is fraught with misconceptions.

GET, can make us worse. If using these "no risk" interventions, instead of proper medical treatment only delays appropriate treatment which can make a medical condition worse.



Barb

 

[Ren]

Thanks @WillowJ. I knew of the Kindlon paper, but I don't recall seeing the other references before.

With the idea of context in mind, I believe P2P also had an exercise themed workshop some time ago. I keep tripping over words - but I'm concerned that contemporary societal problems (in the greater population) are contributing to the problems faced by ME/CFS.

For example, since we live in a time of unprecedented widespread (global) obesity, there's this extra focus on exercise, exercise, exercise. So those who are in charge of healthcare budgets, etc. are going to rail against anyone who they perceive as going against the grain of exercise, exercise, exercise.

(ME/CFS was even first dismissed in the US during the 1980's fitness craze.)

 

[WillowJ]

but I'm concerned that contemporary societal problems (in the greater population) are contributing to the problems faced by ME/CFS.

That makes sense.

Currently there is a focus on prevention, which also emphasizes exercise.

Sadly "exercise and eat right, and don't smoke, and you won't get sick" has limited to no value for many health conditions including ME/CFS.

 

[worldbackwards]

I'm concerned that contemporary societal problems (in the greater population) are contributing to the problems faced by ME/CFS.

I'd make the point that the CBT/GET axis has always had an enormous economic appeal, both in terms of the actual money spent, and also the philosophy that underpins modern economics itself. A handful of sessions of a talking treatment, after which the patient is left to fend for themselves, is infinitely cheaper than long-term drug treatments for chronic illnesses which, by their nature, drag out for decades. (Or at least it would appear so - there's nothing cheap about treatments that don't work, apart from the people who prescribe them.)

Further to that, I would add that the idea of people taking responsibility for their own levels of health, rather than relying on pharmacological cures and treatments, is fundamentally attuned to the neoliberal political/economic project. Ongoing since the end of the seventies and dominating UK/US political discourse, this has it that everything in life comes down to personal freedom and, if you got a bad deal, you were likely enough responsible for it yourself somehow. As such, non-pharma treatments which emphasise personal responsibility were always likely to get an easy ride in this climate.

It also explains the increasing drive to deny benefits for the disabled in general and assume that they could work if they wanted to - they (and we) have, apparently, made a lifestyle choice to be ill on benefits, rather than to work like everyone else does.