Thread by @doctormom63

If you cannot access an #MECFS doctor, following are suggestions to treat possible co-morbidities & get your symptoms documented in your medical record:

1) Ensure thorough work-up for causes of fatigue. Your primary care provider can order most of these tests: /1

This is a great resource for tests to request or check to see if you've had done to evaluate for underlying causes of fatigue: /2

batemanhornecenter.org/wp-content/upl…

2) CARDIOLOGY to evaluate for POTS (Tilt Table Test) or NASA Lean Test can be done in office; at home test: an increase >30 bpm heart rate from supine to standing in adults may indicate POTS.

Treatment for POTS may improve some symptoms but need to find cardio aware of POTS. /3

3) NEUROLOGY but needs to be a neurologist who is aware of Autonomic Dysfunction and Small Fiber Neuropathy (requires skin biopsy).

A good resource to find knowledgeable Cardiologists & Neurologists: /4

dysautonomiainternational.org/page.php?ID=14

This is a great resource if your neurologist is willing to learn, or to check that you've had done:

"Office approach small fiber neuropathy": /5

ccjm.org/content/ccjom/…

4) RHEUMATOLOGY to evaluate for autoimmune disorders like Sjogren’s which can lead to Small Fiber Neuropathy & Autoimmune Autonomic Dysfunction/POTS.

#Sjögrens is the 2nd most common cause of autonomic neuropathy, after diabetes. /6

If your major #Sjogrens antibody tests (SS-A, SS-B) are negative, request the Early Sjogren's Syndrome Profile of "early" antibodies which may become positive long before the "major" antibodies test positive.

These can be ordered as a profile /7
testdirectory.questdiagnostics.com/test/test-deta…

5) PULMONOLOGIST/SLEEP SPECIALIST for Sleep Study to evaluate for sleep apnea;

Treating Obstructive or Central Sleep Apnea may help the mornings be a little less unbearable bc episodes of hypoxia thru the night starve muscles/nerves by reducing production of ATP /8

6) ALLERGY to investigate Mast Cell Activation Syndrome; treating MCAS may be helpful to some patients; /9

sciencedirect.com/science/articl…

7) IMMUNOLOGY to test for immune dysfunction; it has been found that Natural Killer Cell FUNCTION (not number of NK cells) is depressed in #MECFS patients & this may be used as a validating marker for some patients; /10

testdirectory.questdiagnostics.com/test/test-deta…

8) LOW DOSE NALTREXONE may help w/chronic pain, helps some patients w/fatigue. Can be obtained from a compounding pharmacy w/prescription.

These two websites can help you find a prescriber if your doctor will not prescribe:/11


ldnscience.org/patients/find-…
ldnresearchtrust.org/LDN_Prescribers

9) GENETICS to evaluate for mitochondrial/metabolic disorders /12

irispublishers.com/arar/fulltext/…

10) GASTROENTEROLOGY if you have gastrointestinal symptoms, but you may also need to see a GI MOTILITY SPECIALIST to evaluate for dysmotility which can be due to autonomic neuropathy. /13

ncbi.nlm.nih.gov/labs/pmc/artic…

11) Altho I'm a physician w/access to many resources I've still progressed to mod-severe.

And while treatment for POTS & Sjogren's has not improved my #MECFS, it is vital to have symptoms DOCUMENTED in your MEDICAL RECORD, even if the physician says they cannot help you./14

12) Follow up each visit w/brief (2-3 paragraph LETTER) SUMMARY of your complaints & your diagnoses to get this info into your chart & include a copy of a peer-reviewed published journal article:/15

mayoclinicproceedings.org/article/S0025-…

13) I also include this CDC overview of #MECFS bc physicians are more likely to trust information that comes from the CDC or NIH, & more likely to read this info if it is brief & concise:/16



Main CDC page for HCP's: cdc.gov/me-cfs/pdfs/Co…
cdc.gov/me-cfs/healthc…

14) Even with all this I still meet HCPs unwilling to expand their knowledge base so we have to keep searching.

It is exhausting but crucial to find one you may be able to count on if you become more severe & bed bound, even if just to document the severity of your #MECFS /17.

15) #Fibromyalgia should be documented, can be diagnosed by Rheumatologist & a recent study has shown it is likely autoimmune:



There is also a test that *may* be helpful for the diagnosis that any doctor can order:

jci.org/articles/view/…
fmtest.com

16) Consider #CCI Cranio-Cervical Instability & #TetheredCord

a) Request a STANDING MRI of C-SPINE w/flexion, neutral & extension views to check for CCI. Radiologist will unlikely take measurements but this can be done by a knowledgeable neurosurgeon /19

b) NEUROSURGERY consultation

The neurosurgeon will take measurements and along w/clinical history determine if you have CCI.

They should also evaluate for Tethered Cord based upon clinical history; most will request Urodynamic testing as well. /20

Tethered Cord may be occult—not visible on a Lumbar MRI.

Some neurosurgeons may order prone MRI but most will make the diagnosis clinically, based on signs & symptoms along w/urodynamic testing. /21

17) Ensure your physician includes the new ICD 10 diagnosis codes in your chart:

#MECFS G93.32
#POTS G90.A

Critical for these diagnosis codes to be recorded to ensure the number of patients suffering w/these diseases are counted which may lead to increased research funding /22