The Treatment Showdown : CDC Toolkit vs IACFS/ME Primer

July 24, 2012

Posted by Cort Johnson

IACFS/ME Treatment Primer vs CDC Toolkit for CFS

The IACFS/ME Treatment Primer took two years to complete

The publication of the IACFS/ME Treatment Primer “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Primer for Clinical Practitioners” is a landmark event. In this article we’re going to compare, section by section, the two documents.

The CFIDS Association  has created some good doctor education courses in the past  but only the IACFS/ME – the organization of ME/CFS professionals – has the standing to begin to attempt to challenge the CDC’s dominance in this area.  The CDC with its  reputation in the medical community, considerable financial assets, professionally designed website,  broad reach, etc. has a distinct advantage.

CDC Toolkit for CFS Shown in 2006

Dr. Gerberding shows off the CDC Toolkit in 2006

With its low budget (do donate to them when you pick up the Primer), anemic website and generally low visibility outside of the ME/CFS community, the IACFS/ME hardly seems to have a chance…but it  has something the CDC doesn’t have; expertise and credibility within the ME/CFS community.

A 42 page document, the Primer took  two years of work from prominent ME/CFS physicians and researchers with hundreds of years of experience in CFS between them, and a $10,000 grant from Hemispherx (the producer of Ampligen) to get done.  On the other hand the CDC’s 16-page, large print Toolkit, appears to have been put together by staff.

Let’s take a brief  look at the basics of two documents

Basics

Authors

  • CDC Toolkit - authors not stated
  • IACFS/ME Primer -   Seven ME/CFS practitioners, 3 researchers (Fred Friedberg, Ph.D., Lucinda Bateman, B.S., M.D., Alison C. Bested, M.D. F.R.C.P.C., Todd Davenport, D.P.T., O.C.S., Kenneth J. Friedman, Ph.D., Alan Gurwitt, M.D., Leonard A. Jason, Ph.D., Charles W. Lapp, M.D., Staci R. Stevens, M.A. Rosemary A. Underhill, M.B., B.S., Rosamund Vallings, M.B., B.S.)

Size

  • CDC Toolkit – 16 pages, extra-large  type
  • IACFS/ME Primer – 42 pages, normal type

The IACFS/ME Treatment Primer begins with a substantial section on research findings (perhaps better moved to an appendix?) which will not be covered here. Next we compare the Diagnostic sections (including  Diagnostic Tests, Exclusionary Conditions, Co-morbid Conditions,  etc.) of the two treatment manuals. After that comes the Treatment sections.

DIAGNOSING AND DIFFERENTIATING CHRONIC FATIGUE SYNDROME FROM OTHER ILLNESSES

  • CDC Toolkit uses the  International Case Definition developed 18 years ago and unchanged since then. In order to be diagnosed with CFS under this definition someone must have severe unexplained fatigue lasting 6 months or more (not substantially relieved by rest)  and  4 or more of 8 symptoms (impaired memory or concentration, postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity), unrefreshing sleep, muscle pain, multi-joint pain without swelling or redness, headaches of a new type or severity, sore throat that’s frequent or recurring, tender cervical or axillary lymph nodes)
  • IACFS/ME  Primer - uses the  ‘core symptoms’ identified in the 2003 Canadian Consensus Criteria to differentiate ME/CFS from other disorders. To qualify for a diagnosis of ME/CFS a person must have ‘pathological fatigue, post-exertional malaise, sleep problems and pain plus symptoms from two other categories. These can include such symptoms as orthostatic intolerance, irritable bowel syndrome, low body temperature, sensitivities to chemicals, hypersensitivity to light, slowness of thought, etc.

DIAGNOSTIC TESTS

Both organizations recommend a similar series of routine lab tests to rule out other disorders. The IACFS/ME Treatment Primer makes the point that the presence of post-exertional malaise – increased symptoms after exertion – greatly increases the likelihood that the patient has ME/CFS.

Routine Lab Tests CDC IACFS/ME
CBC x x
Total protein x x
Glucose x x
C-reactive protein x x
Creatnine x x
Phosphorous x
Electrolytes x x
Alkaline phosphatase x
Blood Urea nitrogen (BUN) x x
Albumin x x
ANA and rheumatoid factor x
Globulin x x
Calcium x x
ALT or AST x x
Thyroid (TSH and free T4) x x
Urinalysis x x
Erythrocyte Sedimentation rate x
(Liver) bilirubin, ALP, GGT x
(Renal) urea, glomerular filtration rate x
Iron (serum iron, iron binding capacity, ferritin) x
Vitamin b-12 and serum folate x
Creatine kinase x
Vitamin D x

Tests to Be Considered Depending on Symptoms

The Treatment Primer suggests a wide variety of further tests depending on which symptoms are present. The CDC does not believe any symptoms warrant further tests (even though many presenting with a possible diagnosis will have other disorders.)

Test CDC IACFS/ME
Antinuclear antibodies x
Chest x-ray x
electrocardiogram x
endoscopy x
Estradiol and follicle stimulating hormone x
Gastric emptying study x
Gliadin and endomysial antibodies x
immunoglobulins x
Infectious disease screen (HIV, lyme disease, Q fever, etc. x
Microbiology (stools, throat, urine, sputum, genital) x
Morning cortisol x
MRI (if multiple sclerosis suspected) x
Overnight polysomnogram and possibly sleep latency test x
prolactin x
Renin/aldosterone ratio x
Rheumatoid factors x
Serum amylase x
Short ACTH challenge test or Cortosyn stimulation test x
Testosterone x
Tilt table test x

COMORBID ILLNESSES

CDC and IACFS/ME believe different disorders co-occur with chronic fatigue syndrome

CDC and IACFS/ME have very different ideas about which disorders commonly co-occur with ME/CFS

CoMorbid illnesses are other disorders CFS patients can have which physicians should keep an eye out for.   Surprisingly, little agreement existed on which disorders co-occur with chronic fatigue syndrome, with the Treatment Primer proposing far more disorders occur alongside ME/CFS than the CDC does.

Several CDC studies employing random sampling of the general population suggested increased levels of obesity, insulin resistance and metabolic syndrome are present in CFS. The IACFS/ME physicians creating the primer did not cite obesity and insulin resistance but did cite metabolic syndrome as a possible comorbid disorder.

The Treatment Primer, on the other hand, cited a long list of what are sometimes called ‘central sensitivity disorders’  as well as other disorders which are often allied with ME/CFS in the scientific literature.

Among the disorders the CDC does not agree co-occur with ME/CFS are orthostatic intolerance,  interstitial cystitis, TMJ,  vulvodynia, Ehlers-Danlos syndrome, migraine,  restless leg syndrome, endometriosis, myofascial pain syndrome are more commonly found in ME/CFS.

  • CDC Toolkit - obesity, insulin resistance, metabolic syndrome, irritable bowel disease, non-melancholic depression, fibromyalgia, chemical-sensitivity disorder.
  • IACFS/ME  Primer - provides a list of 48 conditions which overlap with ME/CFS including  fibromyalgia, multiple chemical sensitivity, irritable bowel syndrome, metabolic syndrome, irritable bladder syndrome, interstitial cystitis, temporomandibular joint syndrome, migraine headache, allergies, thyroiditis, Sicca syndrome, Raynaud’s phenomenon, and prolapsed mitral valve, endometriosis, vulvodynia, autonomic dysfunction (POTS, NMH, OI), celiac disease, gut motility disorder, hypoglycemia, Ehlers-Danlos syndrome, myofascial pain syndrome,  restless leg syndrome, Sjogren’s Syndrome, etc.

EXCLUSIONARY CONDITIONS

Exclusionary conditions are conditions that can mimic the symptoms of chronic fatigue syndrome which physicians should  rule out before they make an ME/CFS diagnosis.

Neither organization purported to provide a complete list.  There was something of  a physiological/psychological split between the two approaches with the Treatment Primer tending to identifying more medical conditions (intestinal disorders, cardiac disease, anemia, pulmonary disease) that mimic ME/CFS and the Toolkit identifying more psychological conditions (depression, alcohol and substance abuse).

Exclusionary conditions IACFS/ME CDC
Anemias x
Autoimmune diseases x x
Cardiac disease x
Endocrine disorders (diabetes, Addison’s disease, thyroid disease, menopause) x x
 Infectious diseases such as Tuberculosis, HIV/AIDS, chronic hepatitis, Lyme disease x x
Intestinal diseases such as celiac or Crohn’s disease x
Malignancies x x
Neurological disorders such as multiple sclerosis, Parkinson’s disease, myasthenia gravis x x
Primary psychiatric disorders and substance abuse (but not clinical depression) x
 Significant pulmonary disease x
 Primary sleep disorders such as sleep apnea x x
Alcohol and substance abuse x
Mononucleosis x
Depression x

DIFFERENTIAL DIAGNOSES

Differential Diagnoses are disorders which can mimic the symptoms of ME/CFS but are rarely found in ME/CFS patients. These are disorders physicians may need to weed out before they can make a diagnosis of CFS.

  • CDC Toolkit - provides a list of 10 illnesses that can resemble chronic fatigue syndrome (sleep disorders, depression, alcohol/substance abuse, diabetes, hypothyroidism, mononucleosis (mono), lupus, multiple sclerosis (MS), chronic hepatitis and various malignancies)
  • IACFS/ME Primer – lists over 55 potential disease mimics including 5 cardiovascular disorders, 3 autoimmune, 8 endocrine, 12 infections, etc.

Conclusion – the Treatment Primer provides a much more complete and detailed approach to diagnosis in ME/CFS than does the Toolkit.

TREATMENT

Once a diagnosis has been established the next step, obviously is determining how to treat the patient. Once a doctor has a bonified ME/CFS patient  in his/her office what’s next?

Tests to Inform A Doctor’s Treatment

Neither group specifically provides a lists of tests physicians might use to inform treatment options.

  • CDC Toolkit  - The  CDC does not recommend any further tests after their initial  simple blood tests or a sleep study to inform treatment options after a diagnosis has been made.
  • IACFS/ME  - The IACFS/ME has already recommended a variety of possible tests  based on the symptoms present in their Laboratory Test section (Table II). They include such things as tilt table tests, sleep tests, hormone tests, infectious disease tests, etc.

DRUGS

The difference in the emphasis on drug use in the two treatment documents is remarkable.

  • CDC Toolkit - The CDC does endorse the use pharmaceutical drugs to treat ME/CFS but aside from some general recommendations provides no information on which drugs to use. Some recommendations are helpful (use as few drugs as possible, start with small doses, in general do not use narcotics, be careful about prescribing anti-depressants) while others are questionable (medicine for pain or discomfort should be limited to NSAIDS). A doctor reading the Toolkit would have to assume drugs do not play an important role in his/her treatment of ME/CFS.

    CDC Toolkit provides few drug recommendations for chronic fatigue while the Treatment Primer provides over 30

    CDC Toolkit offers no drug recommendations for ME/CFS; the IACFS/ME Treatment Primer offers over 30

  • IACFS/ME – The IACFS/ME primer, on the other hand, provides recommendation and doses for 18 drugs to use in assisting sleep, 14 for reducing pain, five for enhancing energy, 6 for enhancing cognition and 3  for orthostatic and cardiovascular problems. Treatment Primer states that the use of antivirals, antibiotics and antiparasitics can be beneficial in patients where pathogens have been confirmed but provides no diagnostic guidelines or guidelines for drug use.

SLEEP

  • CDC Toolkit -  provides recommendations for sleep hygiene and states that if sleep hygiene does not work sleep drugs may be tried but recommends trying antihistamines first. It does recommend seeing a sleep specialist if sleep problems persist.
  • IACFS/ME - provides similar recommendations on sleep hygiene and provided a list of 18 sleep drugs, recommended doses and short comments on each.  It also suggest rotating drugs. Oddly enough the sleep section does not include information on Xyrem (sodium oxybate).

PAIN

  • CDC Toolkit – provides no section on pain. Its general recommendation is to use NSAID’s.
  • IACFS/ME  – the Primer highlights headaches and their potential for being ‘migrainous’, notes that widespread pain may be a indication of fibromyalgia and provides a variety of non-pharmacologic interventions and drugs. Non-pharmacological recommendations include pacing, physical therapy, hydrotherapy, chiropractic, yoga, Tai-chi, meditation, trans-cranial magnetic stimulation.  The Primer provides dosage and comments on 13 drugs or classes of drugs. Narcotics are not generally recommended but may be needed for severe pain states.  The Primer notes that treating localized pain – before it transforms into widespread pain – is important.   In contrast to the CDC’s suggestion of using NSAIDS, the Treatment Primer states they are often ineffective.

COGNITIVE PROBLEMS

  • CDC Toolkit – provides no information on treating cognitive problems
  • IACFS/ME Primer – suggests a few basic tips (using a memory book, staying away from high-stimulation environments), provides dosage information and comments on six medications (methylphenidate, modafanil, armoadafanil, dextroamphetamines, amphetamine salts, caffeine). Notes that medications seem to work better in patients with ‘sleepiness’ rather than ‘tiredness’ and suggests using the Epworth sleep scale to determine if a patient is more sleepy than tired.

DEPRESSION, ANXIETY AND DISTRESS

  • CDC Toolkit – a section on’ Emotional Issues’ suggests professional counseling and joining a support group.  About a quarter  of the treatment section of the Toolkit is devoted to CBT. (Of the ten pages in the Treatment section, CBT and GET get two pages, Emotional Issues gets one, Coping gets one and Sleep two.) The CBT section in the Toolkit is quite short; it states that ‘some people with CFS may find CBT effective’, that it is used for a wide variety of disorders, that it requires trained professionals, etc.
  • IACFS/ME Primer – after noting that approximately 40% of people with ME/CFS suffer from anxiety or depression ( a rate similar to other chronic illnesses), the Primer focuses on education, developing coping skills to reduce catastrophizing, etc., identifying and engaging in high pleasure/low effort activities, counseling and support groups. The primer states CBT may improve coping strategies and/or assist in rehabilitation, but the idea that changing “illness beliefs” or graded exercise therapy  can “reverse” or cure the illness is not supported by data. Furthermore they state that in ‘routine’  medical practice, CBT has not produced ‘clinically significant outcomes’.  Finally they note that the lack of CBT providers specializing in ME/CFS means the therapy is rarely available anyway.

EXERCISE

  • CDC Toolkit – recommends pacing and a modified GET program which advises patients not to increase exercise/activity levels if symptoms increase afterwards or that causes patients to feel tired at the end of exercise. The Toolkit refers to the Saint Bart’s GET 2008 Guide.
  • IACFS/ME Primer – Does not mention GET,  ties fatigue and post-exertional malaise to reduced aerobic functioning, recommends against exercises lasting more than 90 seconds at a time, recommends using heart rate monitor, activity and pacing.  Provides specfic ‘exercise’ recommendations for severely ill and higher functioning patients.

FATIGUE

  • CDC Toolkit –  no recommendations
  • IACFS/ME Primer – Provides dosage information and comments on five medications (similar to those suggested for cognition.)

ORTHOSTATIC INTOLERANCE

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer – recommends fluid, salt and a drug (fludrocortisone)

DIETARY SUPPLEMENTS

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer – short sections on Vit D, Vit B12, essential fatty acids and herbs

GASTROINTESTINAL PROBLEMS

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer – provides dietary advice, no advice on drugs

DIET

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer – balanced diet, small frequent meals, mentions lactose intolerance, celiac, rotation diets, reduced sugar, alcohol intolerance

URINARY PROBLEMS, MULTIPLE CHEMICAL SENSITIVITIES, ALLERGIES

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer - short paragraph on each

LOW FUNCTIONING PATIENTS

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer –   suggests perhaps one in four patients are confined to their bed/wheelchair and rarely leave their house and are unable to attend regular office visits.  A few are unable to tolerate light, noise and much movement and a variety of chemicals.  Home-based caregivers are needed.  Recommends quiet environment, limited mental activity, minimizing use of medications (starting in very low doses). Activity suggestions begin with range of motion stretches proceeding very slowly.

PREGNANCY

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer – notes that most mothers with ME/CFS have an uneventful pregnancy, that the ME/CFS symptoms of some patients may get worse, some may get better and others show no change. Obstetric problems (lowered fertility, miscarriage, exhaustion during labor, post-partum depression, etc.)  may be more common.  Children may have an increased risk of ME/CFS.

GYNECOLOGICAL PROBLEMS

  • CDC Toolkit – no recommendations. (Ironically the CDC presented a study at the Ottawa IACFS/ME conference showing marked gynecological abnormalities may be present).
  • IACFS/ME Primer – some studies suggest increased incidence of gynecological problems (premenstrual syndrome; anovulatory and oligo-ovulatory cycles; low estrogen levels leading to a multitude of CNS symptoms, loss of libido, and in later years, osteoporosis, dysmenorrhea, pelvic pain, endometriosis, interstitial cystitis, dyspareunia and vulvodynia and a history of hysterectomy). Peri and postmenopausal patients may benefit from hormone replacement therapy. Estrogen use in pre-menopausal patients can improve brain circulation, enhance cognition and provide significant relief from hot flashes, fatigue and insomnia.  A progesterone only regimen such as a progesterone-only pill, or impregnated intra-uterine device may benefit some women.  Hormonal therapy, however, should be limited in duration due to increased risk of breast, ovarian and uterine cancer.

PEDIATRIC ME/CFS

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer – recommends using the Pediatric definition of ME/CFS (based on the Canadian Consensus Criteria).  Suggests diagnosis after 3 months of illness.  States ME/CFS is rarely diagnosed below the age of 10.  While prevalence  appears to lower than in adults, management is largely the same.  Notes that adolescents may meet the Individuals with Disabilities Education Act  (IDEA)

IMMUNIZATIONS

  • CDC Toolkit -  no recommendations
  • IACFS/ME Primer – recommends that people with ME/CFS avoid all but essential vaccinations and be particularly careful about ‘live’ vaccinations

BLOOD AND TISSUE DONATION

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer – based on their lack of ‘wellness’ recommends people with ME/CFS do not donate blood

RECOMMENDATIONS FOR SURGERY

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer -Discussions with surgeon and anesthesiologists prior to surgery is important. Issues such as depleted blood volume, orthostatic intolerance, pain control, and sensitivity to anesthetic medications should be addressed. A Guide to Anesthesia and ME/CFS by Dr. Lapp is found in Appendix E.

CONCLUSIONS

More Missing Than Present – With few tools in its kit there’s more  missing from the CDC toolkit than is present. Somehow the CDC has lopped a simple and rather vague treatment plan onto a rich, complex, notably difficult-to-treat disorder. The simplicity of the CDC’s conception of this illnesses treatment is shocking. More brochure than ‘toolkit’ the CDC guide for treating ME/CFS is so sparse that if one removed the name of the disorder from both publications one could easily assume they were focusing on different disorders.

Even the CDC’s sections on co-morbid illnesses and exclusionary diagnoses seem perfunctory. The CDC’s main treatment recommendations involve CBT and GET – two treatment approaches the authors of the Primer had little faith in and noted were difficult to find in the US. Remarkably, once a diagnosis is made the CDC does not recommend any further laboratory tests be taken. (Depending on which symptoms are present the Primer recommends 30 possible tests).

The Toolkit’s Impact -It takes only a brief look at CFS sections of the Mayo Clinic and WebMd websites to understand how thoroughly the treatment options in the medical community  have been dominated by the CDC’s research and Toolkit.

In 2012 WebMd’s “Chronic Fatigue Syndrome Health Center”  lists the 2009 CDC study on sexual abuse as one of it’s ‘Top Stories’ (“CFS Linked to Childhood Trauma‘ ). WebMD’s  medications section consists of all of 3 pain relievers and ‘antidepressants’ and the Mayo Clinics Treatment section recommends  antidepressants, sleeping pills, graded exercise and psychological counseling.

Neither recommends anything more than basic lab tests and/or a sleep study to guide diagnosis and treatment. One would never guess, based on these sites that some people with ME/CFS suffer from orthostatic intolerance, migraines, severe pain or infections. In fact one wonders why, given the simple treatment recommendations, physicians would be loath to take on ME/CFS ….it looks like a very easy disorder to treat.

Changes in the Works? - The CDC is now consulting with ME/CFS physicians and two CDC/ME/CFS Physician teams are producing two video’s on managing CFS. Eileen Holderman, the patient representative for the CFSAC committee,  went to some pains to note how open the CDC has been to suggestions from the CFSAC panel. The CDC is willing to listen but in its present state, the Toolkit has a long, long way to go and its simplistic orientation to the disorder can only be doing more harm than good.  Unfortunately the CDC rep at the meeting stated that over 17,000 copies have been sent out – ensuring that a good chunk of the medical community – has received an introduction to ‘CFS-lite’.

The IACFS/ME Primer is not perfect. For one thing it’s a ‘primer’, an introduction to ME/CFS treatment not a compendium of it, and some subjects are sketchily reviewed. Viral issues received a scanty overview, with no information  given on diagnosis (admittedly a difficult subject) and,  despite Dr. Lerner’s printed recommendations (also found on the Montoya website) no information is provided for  dosing – a critical factor.  The section on  orthostatic intolerance mentioned only one of the several drugs that are used and Xyrem is not mentioned in the sleep section.

The primer, though, provides a rich overview of this complex disorder with recommendations for many of the  symptoms and conditions associated with it.  Sections on low-functioning patients,  pregnancy, pediatrics, immunizations, gynecological problems, recommendations for surgery and diet are noteworthy additions. The seriousness of the disorder is clearly delineated both in the introductory section and in the long list of treatments provided.

The Primer is a big step forward for the ME/CFS community and will, if it gets out to the physician community, radically change both their perception of, and their treatments for, ME/CFS.

The Future

The CDC has the money and the ‘reach’ (and better graphics) but a big content problem.  The IACFS/ME Primer has the content but little reach outside the ME/CFS community and little money to do outreach.  The best way for the IACFS/ME primer to gain wide recognition would be to incorporate parts of it in the CDC Toolkit.  That may seem like a dream given how far apart the two documents are at this point but the CDC is collaborating with some of the same physicians and researchers that created the primer….and the Toolkit is being revised.  Anything less than a substantial revision would mean CDC would be  ignoring the advice of the very physicians they are working with.

With the Toolkit stating ME/CFS is a ‘complex and serious illness’ on the one hand, while protraying it as some sort of mild, mind-management disorder on the other, the Toolkit is a paradox. Unfortunately given the paltry treatment options offered physicians will undoubtedly believe  the second is true long before they believe the first.

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(Phoenix Rising has updated many of its treatments to include information from the IACFS/ME Treatment Primer. We’ve also added new pages on

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43 comments

{ 43 comments… read them below or add one }

Denise July 24, 2012 at 10:15 am

Thank you for an excellent critique of the Primer and the 't'oolkit. This is very useful and demonstrates what helpful material actually is – as compared to material that does not help people with ME/CFS (or others).

Cort July 24, 2012 at 10:59 am

Thanks Denise – I was astonished at how sparse the CDC Toolkit was…The conception the authors of the Toolkit (probably CDC staff) and the authors of the Treatment Primer (ME/CFS physicians) have of ME/CFS treatment is miles apart….It almost couldn't be wider.

It takes a just quick look at major health websites on the web to see how much impact the Toolkit has had on doctor's views of this disorder…. This document can only lead to undercare of ME/CFS patients and the CDC should remove it immediately.

Denise July 24, 2012 at 11:15 am

"This document can only lead to undercare of ME/CFS patients and the CDC should remove it immediately." It will take well reasoned arguments to do that. Let's work on getting it removed (asap).

richvank July 24, 2012 at 1:46 pm

A very nice job, Cort! The primer is definitely a big improvement over the tool kit. As I told the primer committee at the Ottawa conference, I'm hopeful that a subsequent revision of the primer will include methylation treatment. As you reported, the treatment section of the first edition of the primer is very much dominated by drugs to treat symptoms. Methylation treatment is directed at root causes, is much less expensive, doesn't require prescriptions, and is being shown effective every day by the many people who are trying it, in large part due to reading the reports from others on Phoenix Rising.

Best regards,
Rich

Cort July 24, 2012 at 2:34 pm
fresh_eyes

Hey y'all, on the theme of existential dread & neuro probs – on the "new Virology podcast" thread someone was just saying that he was amazed when his Social Phobia (diagnosed & medicated) went away after taking antibiotics for Lyme. Amazing, no?

I agree Rich…I think Methylation information should be available to everyone who has this disorder…there aren't many low cost options for people with ME/CFS…

WillowJ July 24, 2012 at 4:42 pm

It might be useful to note that the CDC does not actually define post-exertional malaise. This is important because, as far as we can tell, the term is being misused in some research studies.

We think there are several sensations which could be so described, some of which are very unlike what we experience. In fact, some researchers equate it with feeling tired after exercise, which is normal.

heapsreal July 24, 2012 at 5:11 pm

Looks really good. Is this primer going to be introduced to other countries as well?

cheers!!!

Cort July 24, 2012 at 5:28 pm
heapsreal

Looks really good. Is this primer going to be introduced to other countries as well?

cheers!!!

I think there is some discussion about getting it translated into Spanish.

taniaaust1 July 24, 2012 at 8:22 pm
Cort

Thanks Denise – I was astonished at how sparse the CDC Toolkit was…The conception the authors of the Toolkit (probably CDC staff) and the authors of the Treatment Primer (ME/CFS physicians) have of ME/CFS treatment is miles apart….It almost couldn't be wider.

It takes a just quick look at major health websites on the web to see how much impact the Toolkit has had on doctor's views of this disorder…. This document can only lead to undercare of ME/CFS patients and the CDC should remove it immediately.

The CDC and their info is responsible for just how badly ME/CFS patients have been treated worldwide!!! The CDC has never taken this illness truely seriously.

taniaaust1 July 24, 2012 at 9:11 pm

From your summary of the primer. I do think they still need to go A LOT further in some things even if it is only a primer as a primer needs to be ALSO suitable for those who are more severe cases and have many other symptoms too from this illness which actually need treatment.

Too few symptoms treatment are focused on in the primer and more severe ME/CFS cases have FAR MORE then just a few symptoms to try to treat. (so I feel like once again the more severe ME/CFS group isnt being catered for at all in this primer). As 25% of ME/CFS cases are of this group, the primer should also have suitable recommendations for these too and not just focus on the other 75% of the ME/CFS population. It is still playing this illness down by just mentioning a few symptoms and their recommended treatment.. but what of the REST of the symptoms many of us get and have to be treated for????. This primer still has HUGE holes in it for many of us and hence isnt a suitable primer for us as its IGNORING so many things.

eg there are no recommended drugs (according to this summary) on the primer for those who need to take drugs for ME/CFS nausea (I take metoclophamide for that).

ORTHOSTATIC INTOLERANCE

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer – recommends fluid, salt and a drug (fludrocortisone)

by the fluid recommended is the primer just telling one to drink more? or does it go as far as recommend saline IV for those who have severe POTS? Without that recommendation.. the more severely affected group once again have been ignored.

GASTROINTESTINAL PROBLEMS

  • CDC Toolkit – no recommendations
  • IACFS/ME Primer – provides dietary advice, no advice on drugs

Dietry advice is often not enough for the more severe patient group with this issue. There needs to be more advice.
…….

I preach over and over that there needs to be specialists being trained in ME. No normal doctor even with this primer would be capable of taking on a severe ME/CFS case as this primer wouldnt even bring them close to being able to help the patient.

A patient shouldnt have to be going to 6 or so different specialists in different fields (be it gasto/bowel specialists or whatever).. to deal with all the ME/CFS stuff, all cause there is no specialists being trained in our disorder and no good primer to give doctors advice on treating, if it is doctors who are being expected to look after us.

This primer IS NOT suitable for those in the 25% group who it just dont cover well at all. We do not only have a FEW different symptoms to be treated (what of all the rest?) and often our symptoms are more severe then this primer is catering for eg saline IVs may be needed rather then just Florinef. (Florinef does help many of us and hence Im very happy to see it mentioned, but it just isnt enough in my case. I collapsed onto roadway yesterday while trying to cross a road, due to the POTS and couldnt stand back up again, so cars ended up being held up, thank God my support person was with me to stop cars from hitting me..she had to stop the cars).

While the degree of treatment many of us do need is being played down.. this whole sitution is bad and wrong. The lack of treatment advice.. is endangering my life and others!! and what happened to me yesterday is an example of that. (things are still unsafe for me even when out with support person.. what I need is more treatment. Florinef isnt enough!! Why isnt IV saline being mentioned in the primer? Many of the ME/CFS specialists are using it for their more severe cases and it is known to greatly help many in this group).

Why is this illness played down still? .. this primer is still doing that and not catering for a large group of us and unfortunately it is the ones who is needing treatments the most and who are the hardest group for the doctors to treat, who it is letting down.

Yes it is an improvement.. but it does need to be made suitable across the illness range.

Trivilizing this illness is actually endangering lives in various ways be it from severe patients who cant get treatment (primers ignoring symptoms dont help that) and hence then go on to commit suicide due to not being able to handle the symptoms anymore …..
to what happened to me yesterday, I could of been run over yesterday when collapsed on the road as no one has yet tried saline IV with me my ME/CFS POTS is not well uncontrolled.

I plead with those who made this primer to change it, so it caters for the whole range of this illness.

kurt July 24, 2012 at 10:34 pm
richvank

A very nice job, Cort! The primer is definitely a big improvement over the tool kit. As I told the primer committee at the Ottawa conference, I'm hopeful that a subsequent revision of the primer will include methylation treatment. As you reported, the treatment section of the first edition of the primer is very much dominated by drugs to treat symptoms. Methylation treatment is directed at root causes, is much less expensive, doesn't require prescriptions, and is being shown effective every day by the many people who are trying it, in large part due to reading the reports from others on Phoenix Rising.

Best regards,
Rich

I agree with Rich, there was not enough discussion of the methionine metabolism, either the methylation or thiol side, and we know that is a big problem area in CFS. I was particularly disappointed to see they recommended folic acid and not methylfolate. But all in all, this is a big step forward.

heapsreal July 24, 2012 at 10:35 pm

I know these meds can be prescribed off label but it would be good if there was a push for the meds indicated to be approved for use in cfs/me. This would also help give cfs/me more credibility to.

cheers!!!

Dolphin July 25, 2012 at 10:12 am

I imagine the CDC toolkit have been influenced by what happens in the UK and the clinics there, where generally time spent with a physician is minimal e.g. one 10-minute appointment. After that, it's time with allied healthcare professionals who can't request tests or prescribe many if any drugs.

CJB July 25, 2012 at 12:15 pm

IMO the primer is a vast improvement over the "toolkit". During the CFSAC meeting in June, there was a lot of discussion about the CDC website and a lot of pressure to get rid of the toolkit and replace it with the primer.

tania – I hear you, but this primer is intended for use by general practitioners trying to diagnose and provide primary care to ME/CFS patients. A lot more needs to be done for the more seriously ill, but hopefully the primer would lead to better and earlier diagnosis for many and a hope of proper treatment.

Enid July 25, 2012 at 12:34 pm

Existential dread Cort – where did that one come in. Great Primer for all those both feet firmly on the ground though. So many issues addressed.

Firestormm July 25, 2012 at 5:19 pm

Can I ask how this will/might be affected by the Physicians' Guide to the 'International Consensus for ME'? If it ever is published? Will it lessen the impact/confuse the situation?

Be nice if a consensus extended to those who were already in production of this Primer I think.

taniaaust1 July 25, 2012 at 8:02 pm
Firestormm

Can I ask how this will/might be affected by the Physicians' Guide to the 'International Consensus for ME'? If it ever is published? Will it lessen the impact/confuse the situation?

Be nice if a consensus extended to those who were already in production of this Primer I think.

I truely hope that Physicians Guide to the International Consensus for ME goes ahead…there are still way too many gaps in the ME/CFS primer to cover many "ME" patients esp the ones who have a large range of symptoms and extreme symptoms.

I think one needs to be done to focus on ME.

The ME/CFS orgs (when these orgs are catering for both ME and CFS patients) tend to think that general practitoners (normal doctors) can handle ME/CFS (that came up at the last big talks) … thing is they often just cant handle ME cases!!. Hence why I truely think the ME stuff needs to be separate with separate guides, from what I can see a ME/CFS one just isnt going to cover this patient group well.

Sure throw ME and with CFS together if that is what people and orgs wish to do (I personally dont agree but wouldnt be against if if it meant I was getting better treatment, if it was helpful).. but dont leave things so that many with ME are then left in a "big black hole" as ones with extensive ME issues are being left out with people saying .the CFSAC primer as only supposed to be a guide for GPs.. and the ME/CFS orgs saying.. this illness is suitable for GPs to be treating.. when many of us are finding it just isnt and that GPs are unable to deal with us.

Its a nightmare for various specialists who have no training in ME to be dealing with us too… many of the normal treatments they use cant be used on us due to coexisting ME stuff and the complications that causes.

Either guides on how to treat ME patients need to be written so that our specicalists (BOTH non ME ones or ordinary doctors) have something to follow or specialists NEED to be being trained in ME.

I see things getting better and better for the less severe patient group while the severe extensively affected patient group is still being ignored. I can only hope that the International ME consensus stuff will address things so all the range of illness is being focused on. Hence will be upset if this other primer makes it so the other gets less coverage. (its almost like its been put out at a time to compete against the other… conspiratory???)

Firestormm July 26, 2012 at 1:56 am

Perhaps I should rephrase my question :)

Cort: Are you aware if the above Primer took the published ICCME into account? And, (although we are still waiting) would you hope (as I do) that when the authors of the ICCME do publish their 'Primer' for physicians, it takes the above into account? :)

btw Tania – I think as others probably realise by now I am still in (at least) 'two-minds' about whether or not we have been able to prove (let alone by criteria in the absence of objective tests) that we are dealing with 'two' distinct conditions or that what we do have in terms of criteria justify removing the arbitrary 4-6 month 'waiting period'. But I do try and follow all the latest arguments and research.

Cort July 26, 2012 at 10:48 am
Dreambirdie

Hi Tee–

Thanks for checking in with us. But the first two quoted boxes, regarding the retreat experiences, are Fresh Eyes. She's the enlightened one, not me! :)

I'm the one with the chicken legs… in more ways than one! :D:D:D

Good question…I imagine many of the recommendations will be similar – which will provide more of an impetus for the CDC – the only organization with the funds to get its treatment primer out – to change its Toolkit.

CJB July 26, 2012 at 11:33 am

Cort, I so look forward to your replies on these article threads. The non-sequiturs are hilarious and fun. I hope this never gets "fixed". It's cool to see what the computer seems to randomly dig out of the archives.

MishMash July 26, 2012 at 3:35 pm

I'm not surprised by the primer's lameness. No doctor worth his salt is going to rely on CDC info to treat a condition as nuanced and complex as CFS. It's written by bureaucrats. The CDC is good at monitoring the latest flu bug coming from asia, recommendations about obesity, how to avoid seasonal allergies, etc etc. The stuff you and I can read on yahoo.

Every serious CFS patient at this point should have his own informal "Anarchist Guide to the Universe." Meaning you have to use Machevillian tactics to manipulate the medical system to service your illness needs.

Foremost among my guerilla tactics are: 1) Doctor shop as much as you can till you find a MD who believes you, with whom you have a good personal chemistry. Nurture that relationship, just like a saleman would with a long-time client. 2) Make yourself sound as urbane, witty, interesting as possible. Keep emphasizing to him how you can't wait to get off of disability to continue your fantastic professional career. Talk about the days when you were a powerful CEO or Delta Force commando. 3) Get as many test results as you can showing *physical manifestations* of this illness. Nothing will get a new doctor's attention as much as a list of reactivated viruses, for example. They probably won't take a lengthy list of fatigue, weakness, or dizzyness symptom as seriously. Make the disease sound as acute, vs. chronic, as possible. 4) keep every single medical record in easy-to-read and cogent order. Don't just dump a bunch of unabridged test results on his desk. If possible, get summaries of immunological test results, because doctors have about 5 minutes to devote to your incredibly complex illness. 5) At each appointment don't sound too hopeless, lethargic, or apathetic. Sound motivated and anxious to improve. Bring up the latest research (such Rituximab) as a point of interest, but act suspect and unenthusiastic. There's a good chance he'll take the bait and get interested himself.

Doctors are people and they can be manipulated. I consider this to benign, reasonable manipulation. They way you have to manipulate your mechanic to do a thorough job on your transmission. They respond to basic human instincts. All that stuff you hear about how they are completely impartial and professinonally attentive to every patient is utter nonsense. They are like parents, who claim they love all their kids the same, but they don't.

Fred1234567 July 27, 2012 at 5:38 pm

A great site and a great review!! You've done it again Cort!!! The Primer is a great start BUT – needs to add non drug stuff and address the severely ill (maybe you don't have so many severely ill in the USA anymore as GET/CBT isn't so widely preached??). Oxygen and saline 2 very helpful therapies and dietary restrictions. It seems on the diet that the Royal Prince Alfred Hospital- Melbourne, Australia has a great elimination diet that can help you identify new food intolerances that cause gastro issues and a receipt book Friendly Foods to go with it. For people with IBS there is a different diet called FODMAPS – cutting out sugars etc that seems to help. (you can't do both at once as you have to EAT0. Neither diet a cure but if you have food intolerances they can help alleviate symptoms.

I am reluctant to give the primer to my doctors as IV saline and oxygen are not mentioned despite them being the most helpful things!!!

Fred1234567 July 27, 2012 at 5:39 pm

Wear pyjamas to Dr visits if you are severely ill!!!

i.e. try to look as sick as you are!!! It does help!!

Cort August 2, 2012 at 3:27 pm
Firestormm

Perhaps I should rephrase my question :)

Cort: Are you aware if the above Primer took the published ICCME into account? And, (although we are still waiting) would you hope (as I do) that when the authors of the ICCME do publish their 'Primer' for physicians, it takes the above into account? :)

btw Tania – I think as others probably realise by now I am still in (at least) 'two-minds' about whether or not we have been able to prove (let alone by criteria in the absence of objective tests) that we are dealing with 'two' distinct conditions or that what we do have in terms of criteria justify removing the arbitrary 4-6 month 'waiting period'. But I do try and follow all the latest arguments and research.

I don't know…it seems that most of the attention is still on the CCC; it's been around longer and I think people know it more – I think that's why these more organized efforts are focused on it…

Cort August 2, 2012 at 3:36 pm
taniaaust1

From your summary of the primer. I do think they still need to go A LOT further in some things even if it is only a primer as a primer needs to be ALSO suitable for those who are more severe cases and have many other symptoms too from this illness which actually need treatment.

Too few symptoms treatment are focused on in the primer and more severe ME/CFS cases have FAR MORE then just a few symptoms to try to treat. (so I feel like once again the more severe ME/CFS group isnt being catered for at all in this primer). As 25% of ME/CFS cases are of this group, the primer should also have suitable recommendations for these too and not just focus on the other 75% of the ME/CFS population. It is still playing this illness down by just mentioning a few symptoms and their recommended treatment.. but what of the REST of the symptoms many of us get and have to be treated for????. This primer still has HUGE holes in it for many of us and hence isnt a suitable primer for us as its IGNORING so many things.

eg there are no recommended drugs (according to this summary) on the primer for those who need to take drugs for ME/CFS nausea (I take metoclophamide for that).

by the fluid recommended is the primer just telling one to drink more? or does it go as far as recommend saline IV for those who have severe POTS? Without that recommendation.. the more severely affected group once again have been ignored.

I plead with those who made this primer to change it, so it caters for the whole range of this illness.

I agree there is still a ways to go…Saline solution is not mentioned – although many people who see enlightened doctors now use it. I know of someone who did great on Xafaxin – not mentioned…There's nothing on probiotics…the Immune side is almost completely ignored – nothing on any of the antivirals, oxymatrine, isoprinosine, etc…Nothing on propanolol or atenolol for OI…not having xyrem in there was really strange – since that drug is pretty well known; they must have considered it and then left it off for some reason…Honestly I would have included Amygdala retraining for stress reduction….

The primer is not necessarily done by the way; they are still asking for responses and tweaking it.

Still a huge improvement over the toolkit and an eye-opener, I imagine, for any physician who knows ME'/CFS only from the Toolkit.

Cort August 2, 2012 at 3:41 pm
Fred1234567

A great site and a great review!! You've done it again Cort!!! The Primer is a great start BUT – needs to add non drug stuff and address the severely ill (maybe you don't have so many severely ill in the USA anymore as GET/CBT isn't so widely preached??). Oxygen and saline 2 very helpful therapies and dietary restrictions. It seems on the diet that the Royal Prince Alfred Hospital- Melbourne, Australia has a great elimination diet that can help you identify new food intolerances that cause gastro issues and a receipt book Friendly Foods to go with it. For people with IBS there is a different diet called FODMAPS – cutting out sugars etc that seems to help. (you can't do both at once as you have to EAT0. Neither diet a cure but if you have food intolerances they can help alleviate symptoms.

I am reluctant to give the primer to my doctors as IV saline and oxygen are not mentioned despite them being the most helpful things!!!

I had forgotten about saline but agree that its surprising that its not in there. I know that Dr. Peterson, Dr. Klimas, Dr. Bell all use it regularly and its safe and pretty effective in the short term..that and no xyrem were kind of head-twisters…I would shoot them a email asking them to put it in…the Primer is not done from what I've been told…Maybe we should make a list here of suggestions…

Fred1234567 August 2, 2012 at 9:31 pm

I agree Cort a list of suggestions/recomendations -
More focus on the 25% of people that are severely ill, these people are so ill they often can't access health care and yet given the severity of their illness they need the most help.

In my opinion if a treatment has/does help some ME sufferers it should be in the primer. There are many many examples of other diseases for which no all drugs work. I am frustrated that the ME community seems to expect a one shot FIX for all ME patients. This is more stringent than the effect of most drugs/treaments ….

Oxygen – helps with brain tissue hypoxia and helps the neurotransmitters so I am told.
Saline – well documented to help with POTS and severe ME.
Drugs a list of all that may help.
Dietary specific details how to test eg Royal Prince Alfred Elimination Diet, Melbourn Australia to identify intolerances to gluten/lactose/amines/glutamate and saliclyates (Friendly Foods receipe book)-about $84 for both and can be ordered on line.
FOFMAPS diet- for irritable bowel syndrome.
….

Anne August 3, 2012 at 9:19 am

Cort, is there any chance you could expand this great post with a comparison between the IACFS/ME Primer and the booklet version of the Canadian Consensus Document (see http://www.rme.nu/sites/rme.nu/files/me_overview.pdf)? The CCC overview also has treatment suggestions etc and it would be very interesting to see how the two differ.

In Sweden, we have previously sent out the CCC overview to doctors, but we are now considering changing that and sending out the IACFS/ME Primer instead. A comparison would help us greatly in our decision!

A drawback with the Primer is that, as of yet, it's not available in a booklet format (to buy, like the CCC overview booklet/brochure). One has to print the Primer and staple it, which doesn't give as professional an impression as a proper booklet.

Fred1234567 August 3, 2012 at 4:17 pm

The Primer needs to cater for the severely ill as otherwise we will be forgotten.
A section on how to minimise the impact of a hospital visit- eg use a bed trolley, wait away form noise, let carers do most of the talking ie minimise time with the patient. Dr's don't realise how much telliing them our medical history takes out of us. I have been allowed to wait in an empty nurses station, a cupboard, a spare office, the back of my car in the carpark, an isolation room and a kind specialist event kicked his colleague out of a room so I could wait in there!!!! All these patient needs need to be included in the Primer….

It was clear that I had ME after 3 months of being ill- as the ICCC state why wait an arbitary 6 months this is NOT required for any other serious illness. When you meet the criteria for ME you have ME. If you don't meet the criteria for ME as defined by the ICC or Canadian Guidelines then you either have atypical ME or a different disease. Many other diseases recognise atypical forms of the disease.

Lets get the CONTENT of the primer right before getting it printed. A bummer that 17,000 copies have been sent out already!!!!

This site is fantastic and gives us all hope.

taniaaust1 August 4, 2012 at 5:40 am
Cort

I agree there is still a ways to go…Saline solution is not mentioned – although many people who see enlightened doctors now use it. I know of someone who did great on Xafaxin – not mentioned…There's nothing on probiotics…the Immune side is almost completely ignored – nothing on any of the antivirals, oxymatrine, isoprinosine, etc…Nothing on propanolol or atenolol for OI…not having xyrem in there was really strange – since that drug is pretty well known; they must have considered it and then left it off for some reason…Honestly I would have included Amygdala retraining for stress reduction….

The primer is not necessarily done by the way; they are still asking for responses and tweaking it.

Still a huge improvement over the toolkit and an eye-opener, I imagine, for any physician who knows ME'/CFS only from the Toolkit.

Thanks for thinking of Probotics. Probotics are a helpful thing for some and with the amount of us who have bowel issues.. it certainly should be mentioned and esp since safe too. No reason at all for them to leave that one out and it is commonly suggested by medical professionals for IBS. http://wwcoco.com/cfids/bernesx.html The stastics for IBS in ME/CFS is 50-90% of us.. so that symptom should be being recognised and have some treatment suggestions mentioned for it in the primer. eg fibre supplements and probotics would be the sensible things to have mentioned.

Primer should be covering all common symptoms of our illness. (the above link with stats gives ideas on these things).. Primer something a doctor can look at and feel more confident with dealing with the large group of symptoms we have, help them to see treatment of all our symptoms doesnt have to be hard…. No doctor should be shrugging his/her shoulders and saying "there is nothing which can be done for ME/CFS and you". (I had to go to a bowel specialist before probotics were mentioned to me, they didnt help me but Im still glad I tried them).

Thanks to for saying its not necessarily done yet as it gives me hope that this will maybe made much better. I really hope there will be a lot more added to it.

I understand they cant include everything in a Primer but how about giving doctors a few treatment options for each symptom (too many options would end up confusing doctors on what to do so a careful balance of things needs to be there)..

but the subgroups with this illness shouldnt be forgotten either eg (I dont know if that primer included some common FM drugs for those who also have FM. a large group of us have coexisting FM too but if it dont include some FM drugs for that group, it should) . Also antivirals need to be mentioned at least for the subgroup of us who have issues with the viruses, it would be terrible for that not to be mentioned at all.

So basically 3 faults currently

1/ Many "common" ME/CFS symptoms being left out
2/ Severe group not being catered for
3/ Subgroups of ME/CFS not being catered for

taniaaust1 August 4, 2012 at 5:44 am
Cort

…the Primer is not done from what I've been told…Maybe we should make a list here of suggestions…

maybe making a list of things which they should think about including would be a great idea. It seems they could do with more patient imput. As we have the illness ourselves.. we know what is being used and what is or not helping our patient group.

Cort August 6, 2012 at 12:05 pm

I was just informed that the Primer is undergoing a review right now – expect some changes.

Cort August 6, 2012 at 12:07 pm
CJB

Cort, I so look forward to your replies on these article threads. The non-sequiturs are hilarious and fun. I hope this never gets "fixed". It's cool to see what the computer seems to randomly dig out of the archives.

They do add something in an unexpected way…a bit of frivolity or something….I expect they will keep coming since I don't think we have a clue what's going on…:)

Firestormm August 8, 2012 at 2:33 am

Having now listened to the last Ciffsack (CFSAC) meeting in June I am suddenly awakened to the potential importance of this Primer from IACFS/ME.

Boy. My fellows across the pond really do have it bad. Whilst we here in Britsville have the NICE Guidelines (not perfect but in the hands of all NHS Doctors and others associated with the diagnosis, management and treatment of CFS/ME) i.e. a central framework; you guys don't have anything.

I had no idea. I find it quite shocking to be honest. So Ciffsack have recommended unanimously that this Primer be endorsed by the Health Secretary – correct?

Whilst I have read of your concerns about the effectiveness or power of Ciffsack in influencing your central state organisations – a move to provide some framework have to be welcomed.

Now that I recognise the importance of this document I've downloaded it to read. I understand from the meeting that this goes further than our own NICE Guidelines and I am very conscious of how hard it will undoubtedly be to implement this document in full.

I still cannot believe that e.g. Fukuda has not been adapted/rolled out to all your physicians along with guidelines for the management and treatment of this condition.

Stunned.

I shall return to the thread once I've read and digested…

http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

Firestormm August 8, 2012 at 12:53 pm

I posed the question to CFIDS on Facebook wondering what their thoughts were on this Primer and the recommendation from CFSAC. An interesting reply I thought:

It's a solid document and it's obvious that the authors included what they thought other health care professionals need to know to knowledgeably diagnose and manage patients.

It's regrettable that they they didn't spend much time on a distribution strategy for the document. Clinical staff generally access info in two formats — "just in time" when they have a patient in the exam room and need to find out snapshots of info about testing or treatment, best formatted in a step-wise algorithm ("if X, then Y") format OR continuing education, which must come with units approved by their particular licensing body (MD, RN, PA, NP, etc.). (There are whole industries built around the publication of medical information in these 2 formats and mobile formats are growing in popularity as well.)

Unfortunately, the primer meets neither one and thus it may be difficult to get into wide use in the clinical field whether HHS adopts it or not. It's most likely to reach providers via their aware patients and may find its place as an office reference tool that way.

Any further thoughts guys?

Firestormm August 13, 2012 at 9:58 am

I am now thinking this Primer is a complement to the Canadian Consensus. Am I right? Whilst I have yet to read the document in full I can't help but notice the names involved. If it didn't complement the CCC I would be surprised. Also, I wonder if the intention is therefore that the CCC is used for research and this Primer for clinical diagnosis?

Firestormm August 22, 2012 at 4:57 am

From the August 2012 IACFS/ME Newsletter: http://www.iacfsme.org/NewsletterAugust2012/tabid/512/Default.aspx

…Two major IACFS/ME efforts are in play. First our ME/CFS Primer for Clinical Practitioners published on our website in May has received many favorable reviews.

In addition, in its June meeting, the (US) CFS Advisory Committee in Washington, D.C. recommended wide dissemination of the Primer, particularly to primary care providers.

The discussion included the National Guideline Clearinghouse (NGC) as a possible venue.

The NGC is a website intended to make evidence-based clinical practice guidelines, related summaries, and companion materials widely available to health care professionals.

It is supported by the Agency for Healthcare Research and Quality, the lead US agency charged with improving the quality, safety, efficiency, and effectiveness of healthcare.

In response to an invitation from the NGC, we submitted the primer for consideration in their guidelines listings. We have just received word that the Primer has been accepted for inclusion and posting on the NGC website in the fall.

This will facilitate much wider dissemination of the document.

A future revision of the Primer will consider the public feedback we have received including

(a) concerns about the negative effect of any type of exercise in severely ill homebound patients;

(b) requests for more information on the potentially positive impact of pleasant activities;

and

(c) strong sentiments for wide dissemination of the Primer…

Fred Friedberg, PhD

President

IACFS/ME

Ember August 22, 2012 at 3:44 pm
Firestormm

From the August 2012 IACFS/ME Newsletter:

"A future revision of the Primer will consider the public feedback we have received including

(a) concerns about the negative effect of any type of exercise in severely ill homebound patients…."

Although it uses the CCC, the Primer (unlike the ME/CFS Guidelines) fails to advise that GET is contraindicated for ME patients. Instead, it limply suggests that “consultation with rehabilitation professionals knowledgeable about ME/CFS may also be desirable” and that a graded activity program may “assist in rehabilitation:”

CBT is a much publicized and debated psychotherapeutic intervention for ME/CFS that addresses the interactions between thinking, feeling and behavior. It focuses on current problems and follows a structured style of intervention thatusually includes a graded activity program. CBT may improve coping strategies and/or assist in rehabilitation, but the premise that cognitive therapy (e.g., changing “illness beliefs”) and graded activity can “reverse” or cure the illness is not supported by post- intervention outcome data (78,79).

Though it warns against triggering PEM, the Primer doesn't warn that GET, in doing just that, risks turning mildly or moderately ill ME patients into severely ill homebound patients, incapable of almost any type of exercise.

WillowJ August 22, 2012 at 4:56 pm
Firestormm

I posed the question to CFIDS on Facebook wondering what their thoughts were on this Primer and the recommendation from CFSAC. An interesting reply I thought:

Any further thoughts guys?

I agree that putting it into a CME would be better than the current form, and I have mentioned this here before. Docs are too busy to read something unless they get credits for it. I didn't know about the 'point of use' form but that seems a good improvement, too.

Seems some of us should write the IACFS/ME and politely suggest this. If they need funding to do this, then we need to look for a source of funding as well.

NSG would be a good start, as it would seem official there and doctors would know to look there I assume.

Guido den Broeder August 30, 2012 at 1:33 pm

This primer still includes a lot of CFS-babble.

The ME key aspect of postviral inflammation, on the other hand, is missing entirely.

Bob October 4, 2012 at 7:47 am

I'm not exactly sure about the significance of this, but The CFIDS Association of America has said that "The IACFS/ME primer for healthcare providers has been accepted by the National Practice Guidelines and it is listed as "in progress" on the site now: http://guideline.gov/browse/in-progress.aspx (listed under "I," alpha by organization)"

CAA announcement:
http://www.facebook.com/photo.php?pid=136441201&l=f23d1671e8&id=47921632107

Bob October 4, 2012 at 8:03 am
Dolphin October 12, 2012 at 10:51 am
Cort
taniaaust1

From your summary of the primer. I do think they still need to go A LOT further in some things even if it is only a primer as a primer needs to be ALSO suitable for those who are more severe cases and have many other symptoms too from this illness which actually need treatment.

Too few symptoms treatment are focused on in the primer and more severe ME/CFS cases have FAR MORE then just a few symptoms to try to treat. (so I feel like once again the more severe ME/CFS group isnt being catered for at all in this primer). As 25% of ME/CFS cases are of this group, the primer should also have suitable recommendations for these too and not just focus on the other 75% of the ME/CFS population. It is still playing this illness down by just mentioning a few symptoms and their recommended treatment.. but what of the REST of the symptoms many of us get and have to be treated for????. This primer still has HUGE holes in it for many of us and hence isnt a suitable primer for us as its IGNORING so many things.

eg there are no recommended drugs (according to this summary) on the primer for those who need to take drugs for ME/CFS nausea (I take metoclophamide for that).

by the fluid recommended is the primer just telling one to drink more? or does it go as far as recommend saline IV for those who have severe POTS? Without that recommendation.. the more severely affected group once again have been ignored.

I plead with those who made this primer to change it, so it caters for the whole range of this illness.

I agree there is still a ways to go…Saline solution is not mentioned – although many people who see enlightened doctors now use it. I know of someone who did great on Xafaxin – not mentioned…There's nothing on probiotics…the Immune side is almost completely ignored – nothing on any of the antivirals, oxymatrine, isoprinosine, etc…Nothing on propanolol or atenolol for OI…not having xyrem in there was really strange – since that drug is pretty well known; they must have considered it and then left it off for some reason…Honestly I would have included Amygdala retraining for stress reduction….

The primer is not necessarily done by the way; they are still asking for responses and tweaking it.

Still a huge improvement over the toolkit and an eye-opener, I imagine, for any physician who knows ME'/CFS only from the Toolkit.

Hi Cort,

Thanks for your work on the review – interesting.

Small correction on your comment: Isoprinosine is mentioned:
"As immunological factors may play a role in ME/CFS, immune modulators such as isoprinosine (Imunovir®) may be helpful in selected patients."

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