The Treatment Showdown : CDC Toolkit vs IACFS/ME Primer

[caption id="attachment_12808" align="alignright" width="168" caption="The IACFS/ME Treatment Primer took two years to complete"] [/caption]

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.

[caption id="attachment_12809" align="alignleft" width="210" caption="Dr. Gerberding shows off the CDC Toolkit in 2006"] [/caption]

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

• CDC Toolkit - http://www.cdc.gov/cfs/toolkit/index.html
  
• IACFS/ME Primer - http://iacfs.net/Home/Primer/tabid/509/Default.aspx
  

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


[caption id="attachment_12812" align="alignleft" width="270" caption="CDC and IACFS/ME have very different ideas about which disorders commonly co-occur with ME/CFS"] [/caption]

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.
  
  [caption id="attachment_12814" align="alignleft" width="200"] CDC Toolkit offers no drug recommendations for ME/CFS; the IACFS/ME Treatment Primer offers over 30[/caption]
  

• 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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• Doxepin Elixir (Sinequan)
  
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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).

 

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.

 

"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).

 

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

 

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...

 

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.

 

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

cheers!!!

 

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.

 

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.

 

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.

 

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.

 

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!!!

 

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.

 

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.

 

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.

 

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.

 

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???)

 

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.

 

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!

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.