Best way to educate my doctor and respond to him/her

[Jennifer J]

Hi, Everyone. Thank you all for all your input into these forums. It is very helpful especially laying crashed in my bed. I really appreciate everyone's effort and knowledge.

Here's my dilemma, my PCP retired and now I'm in search of a new doctor. I was thrilled when I found the ICC primer thinking this would be good to share with doctors when I see them. Expressing myself is often a struggle with my slow, foggy brain.

I don't know what to say now that the IOM report is out. Is the ICC the best thing to show them? What would I say to the doctor, especially if they speak of the IOM or the CDC's CFS site?

I tend to do a poor job knowing what or how to express to anyone details about our medical condition. (I know the history and all.) When I have shared with someone, they usually seem to take it in a direction that I need to respond more which I don't have the speed, energy or words to do so. Some day I'd like to find a way to condense some of this in a one or two page format to give out which would also include a little about CFS and CDC history. People I'd like to share with wouldn't take the time to read any of the longer written pieces on this.

Any suggestions regarding what to give and say to a new doctor (the IOM or ICC or ?), and words that you have used that have helped others to understand, would be so greatly appreciated. Thank you.

 

[oceiv]

Hi Jennifer. IOM vs. CCC: It depends. I have in the past, printed out the CCC symptom list. My symptoms match it well. If your symptoms are represented by the CCC, then print it out and check/circle which symptoms you have (pages 2 and 3 of the CCC). That way you don't have to verbally communicate much except: here's a list of my symptoms. Same goes with the IOM criteria. You can print both, if both criteria apply. I believe it would be about 3 pages total for both symptom lists. I also sometimes type a list of my symptoms (much easier than writing, for me), medications and supplements. When a doc asks what I'm taking, I hand over the list. Much less verbal communication necessary.

I too, have a new doc appointment soon and am interested in what people bring to their appointments to help explain this disease. Thanks for asking this question.

 

[Jennifer J]

Thank you, Oceiv. That is very helpful. Great idea printing and checking/circling the symptoms that you have, I'm going to do that. Thank you for including the CCC link and page numbers, too!

 

[taniaaust1]

I take to any new doctor 3 things

1/ A typed list of all the supplements and medications I take and the medication dosages. (I keep it in a file on my computer so it can be easily updated)

2/ The CCC overview booklet for any new doctor Im going to keep seeing to keep (unfortunately my state society is now running out of these so I wont be able to do that any more). I think in future I'll just copy the whole CCC overview from online and just pull out the any needed pages to give the doctor when things come up.

3/ The ME/CFS symptom list at http://wwcoco.com/cfids/bernesx.html (I highlight the ones I have or get with this (which is almost all there) . (I don't find the CCC says enough of the symptoms)
.........

If its a new ME/CFS specialist I'm seeing, I take with me a printed thing of my whole ME/CFS history, which includes a long list of things I've tried in past and what has failed.

 

[Valentijn]

@Jennifer J - Depends on your goal. For convincing your doctor that it's a real biological disease, the IOM is probably more useful because it comes from a familiar, mainstream, and reputable source.

For diagnosis, the IOM isn't yet in a really doctor-friendly form, I think. The CCC primer could be better for that, as well as for dealing with symptoms.

 

[Raindrop]

I really appreciate this conversation, which I just now had the energy to join. (Sorry for being late on this1)
The CCC primer is mentioned quite a few times. So VERY sorry for my ignorance, but is the CCC
the same as the International Consensus Panel? Can anyone tell me what the CCC is, and give me a link
to that?

I have studied the International Consensus Panel Primer for Medical Practitioners and it IS
a fabulous publication. I have given it to about three MDs, mostly *just* the section that
pertains to that doctor's specialty with a few introductory pages.
Most have seemed interested and many have even told me they
would definitely read or skim it. Sadly (after I was so encouraged) they all disappointed me and none
ever really looked it over :-( Am I giving them the wrong publication? I really thought that this was ideal,
as it is broken down into sections (cardiac/neurological/immune) and was written BY physicians FOR
physicians. I heard there was a *newer* version as well. I think my copy was from a few years ago.
Does anyone know what the latest version is (and year) and if there a link to download it into print?

Thank you!! Dealing with new physicians is just SO challenging!!!

 

[Jennifer J]

Thank you, @taniaaust1, @Raindrop, @Valentijn for your responses, too! I will use your suggestions, they are very helpful I've wanted to respond sooner to thank you. Sorry for the late reply.

It sounds as if the CCC is preferred to the ICC which I appreciate knowing. I also forgot about the IACFS/ME. Is the CCC preferred to that, too?

@Raindrop, Yes, dealing with physician is sooo challenging. Sorry about your doctors. @oceiv above has a link to the CCC you asked about. Thank you for your suggestions, too about the ICC.

I have an addition to the above which probably would do best as a new thread.

Does anyone else have any input on what they've said to their doctor(s) so they'd understand ME/CFS?

Thanks everyone.

 

[Ember]

It sounds as if the CCC is preferred to the ICC which I appreciate knowing

Why would you prefer to provide your new doctor with a document that's over a decade old?

 

[Jennifer J]

Hi, Everyone. Two of my threads were just merged because they are fairly similar. Please excuse any redundancy, my energy is going kaput now.

I saw a doctor last year, who for the time being will be my PCP, she said she doesn't know CFS and she'll read up on it. In 2 days, I'm going back for the first time to see her for something else and will need to talk about my ME/CFS/SEID, too.

I'm concerned about what she may have read or heard from other doctors during her inquiry into it. I really don't have the energy or brain power to respond to anything contrary she may say. I'm too foggy and I'm at a loss at what is best to say without complicating things more for me.

The CCC and IOM, as well as the ICC have been suggested to share. I was wondering about the IACFS/ME primer? I've spent hours reading through some threads but I'm too fatigued to read more and try to figure it all out.

Any other thoughts on educating my doctor, how to say it and how to respond to anything undesirable?

Thank you all. I really appreciate you all and the effort you put into this site

 

[halcyon]

At this point the IOM report is the most "official" of the bunch, being the only one from a major US medical institution. With that said, if you've already been diagnosed, and she accepts the diagnosis, having her read the IOM report won't do much for you in terms of further testing and treatment.

I guess it would help to know what your goal is in giving her these documents. In general though, I'd say the ICC primer is the best, and perhaps the IACFSME primer would be the next best. The CCC is a bit out of date at this point.

 

[Nielk]

Isn't it a pathetic state that ME patients are in after three decades in the US, it is up to a new patients to educate a doctor about how to diagnose his/her disease?

The fault lies 100% with HHS,CDC and NIH. They have totally failed us. We have over a dozen criteria and a bunch of names and where are we? No physician education and no government accepted ME criteria.

HHS has further split us apart by yet again creating a government constructed criteria.

Just to clarify, the IOM criteria right now are just a recommendation. We have not heard from HHS yet what they will do withi it.

I'm really sorry that this is the state of affairs for all of us. It is really insane.

Today, even if a clinician were to be interested in this disease, they would be totally confused.

If they would look it up on the CDC website, they would see the 1994 Fukuda criteria and the recommendation for GET and CBT as favored treatments.

If they had read an article about the IOM report, they would read about the IOM criteria and just treating the symptoms.

If they had any knowledge or contact with one if the ME expert clinicians or researchers, they would hear about the CCC and ICC. Although the ICC is newer and more comprehensive, it hasnit been widely used.

The CCC was adopted by the International Associationi of ME/CFS, as well as the 50 worldwide experts who signed the letter against the IOM process to redefine and re-brand the disease.

My personal advice would be to bring the CCC primer and show which symptoms you currently experience.

I'm sorry that this is so confusing!

 

[Ember]

Any suggestions regarding what to give and say to a new doctor (the IOM or ICC or ?)

You might want to provide the Laboratory/Investigative Protocol for your doctor. The ICC advises that doctors should "diagnose by criteria and confirm by laboratory and other investigations:"

Laboratory/Investigative Protocol: Diagnose by criteria. Confirm by laboratory and other investigations. A broad panel of tests provides a more robust basis to identify symptom patterns, abnormalities and orient treatment.

Routine laboratory investigation: □ CBC, □ ESR, □ CA, □ P, □ RBC Mg, □ vitamin D3, □B12 & folate, □ ferritin, □ zinc, □ FBS, □ PC, □ Hb A1C, □ serum electrolytes, □ TSH, □ protein electrophoresis screen, □ CRP, □ creatinine, □ ECG (U+ T wave notching),
□ CPK and liver function, □ rheumatoid factor, □ antinuclear antibodies, □ urinalysis,
□ essential fatty acids, □ CoEnzyme Q10, □ immunoglobulins, □ diurnal cortisol levels, □ TTG, □ serotonin

Additional laboratory investigation: (as indicated by symptoms, history, clinical evaluation, lab findings, risk factors) □ 24 hour urine free cortisol, □ DHEA sulphate,
□ ACTH, □ chest x-ray, □ hormones including free testosterone, □ panoramic x-ray of dental roots, □ amino acid profile, □ abdominal ultra sound, □ lactose/fructose breath test

Further testing with specificity to ME, if and as indicated. Some tests are in the research stage but can identify abnormalities and focus treatment. Viral tests should be interpreted by a physician experienced in these infections.
Pathogen: □ Enterovirus; Tests: RT-PCR, serology, stomach biopsy
Pathogen: □ mycoplasma; Tests: DNA-PCR, serology
Pathogen: □ EBV, □ CMV, □ HHV-6; Tests: DNA-PCR, serology, antigenemia
Pathogen: □ Borrelia burgdorferi; Tests: DNA-PCR,serology, Western Blot
Pathogen: □ Clamydia pneumonia; Tests: DNA PCR, serology
Pathogen: □ Parvovirus B19; Tests: DNA-PCR, IgG, IgM

Immune system profiles: □ *↓NK cell function &↑cytotoxicity; □ B & T-cell function: □ IgG, □ IgG subclasses 1-4; □ IgA, □ IgM (shift from T1 to T2),
□ cytokine/chemokine profile panel (94% accuracy): IL-8, IL-13, MIP-1β, MCP-1, IL4,
□ flow cytometry for ↑ lymphocyte activity, □ ↑37 kDa 2-5A RNase L immunoassay – defect/ratio & bioactivity, □ food sensitivity panel, □ chemical sensitivities, □ stool for WCB - D-lactic acid bacteria balance, ova & parasites, □ autoimmune profile, Intestinal dysbiosis: □ IgA & IgM for intestinal aerobic bacteria in serum, □ ↑ leukocyte elastase activity in PBMCs, □ IgG food intolerance test, □ toxoplasmosis

Neurological & static testing: □ *SPECT scan with contrast - ↓ cortical/cerebellar region cerebral blood flow (rCBF) in the frontal, parietal, temporal and occipital & brain stem regions - more brain involvement indicates increased illness severity, □ MRI of brain – (increased T2-weighted images in high white matter tracts & loss of GM volume) & rule out MS, □ MRI of spine (dynamic disc bulges/herniation, stenosis), □ sleep study (↓ stage 4 sleep, sleep pattern & rule out treatable sleep dysfunctions – upper airway resistance syndrome, sleep apnea, etc.)

PENE: A 2 consecutive day comprehensive 8-12 minute cardiopulmonary exercise stress test (measuring heart, lung, and metabolic function) - only ME patients have significantly worse scores the second day & abnormal recovery from exertion. *Exercise tolerance test with expired gas exchange - (2 consecutive days) – measure cardiovascular, pulmonary & metabolic responses at rest & during exercise: □ peak oxygen consumption VO2 or VO2 at anaerobic threshold (AT) - decline of 8% or greater on test 2 indicates metabolic dysfunction, □ post-exercise blood analysis - increase in sensory, adrenergic and immune genes - increase in metabolite receptors unique to ME

Energy metabolism/ion transport: □ ATP profile – identifies insufficient energy due to cellular respiration dysfunction □ further ATP related parameters, superoxide dismutase and cell-free DNA Respiratory: □ pulmonary function test Cardiovascular: □ Tilt table test to confirm OI (70 -80% tilt, measure HR continuously, BP periodically – 30 min or presyncope); □ Cardiac output decreases - left ventricular dysfunction in the heart; □ 24-Hour Monitor for suspected arrhythmia, NMH/POTS, myocarditis (Note: Repetitively oscillating T-wave inversions &/or T-wave flats, typical of ME, may be subsumed under non-specific T-wave changes.)

The IOM's Report Guide for Clinicians doesn't suggest any laboratory testing or imaging.