Action Alert – Huge Insurance Broker Stops Paying for Autonomic Nervous System Tests
You probably have not undergone most forms of autonomic nervous system (ANS) testing at your doctors - yet, but there’s a good chance it’s in your
future. With the ANS problems showing up in study after study, and small fiber neuropathy making the news in fibromyalgia and ME/CFS, there’s a darn good chance your doctor is going to want to really check out your ANS at some point.
That includes doing things like the QSART (Quantitative Sudomotor Axon Reflex Test), Valsalva testing, Thermoregulatory Sweat Testing (TST), Sympathetic Skin Response (SSR), siliastic skin imprint, cold pressor hand grip, and others.
The huge Insurance Wellpoint just informed the public they’re not paying for any of it anymore (except tilt table testing).
How ironic this happens just as the ANS really starts heating up in ME/CFS/FM.
It gets worse Autonomic nervous system specialists are already a) overbooked and b) hard to find. Dr. Peter Rowe, for instance, is so slammed with patients, he could easily add another practitioner or two or three, but his hospital isn’t interested. The ANS is just not a big enough money-maker.
Dysautonomia International is rallying the fight to stop Wellpoint. They called Wellpoints decision “devastating news for patients diagnosed with various forms of dysautonomia. These patients may need follow up testing to see if their autonomic dysfunction has progressively worsened, stabilized, or improved. This is disastrous for those who have yet to be diagnosed. Without autonomic function testing to confirm a diagnosis, they will not be given proper treatment. Wellpoints policy could force the few autonomic labs available to close their doors.”
From Dysautonomia International’s blog
As of October 2013, WellPoint, one of the largest insurance companies in the United States, is no longer covering autonomic function testing. WellPoint controls many Blue Cross Blue Shield companies, insuring over 36 Million Americans.
As a patient community we must stand together to fight this! If WellPoint gets away with this new policy, other insurance companies will follow. Aetna is already considering similar changes. We must stop this before it spreads to all insurers!
How You Can Help:
- E-mail WellPoint and tell them this is unacceptable. Here’s a sample e-mail. Send it to these guys:WellPoint CEO, Joseph Swedish – email@example.com, WellPoint Chief Medical Director, Dr. Samuel Nussbaum – firstname.lastname@example.org
- If you receive an insurance denial for autonomic function testing appeal, appeal, and appeal again!
- Donate to Dysautonomia International. Support our efforts to oppose this insurance disaster. 100% of your donation helps us fight on your behalf. Dysautonomia International is an all volunteer 501(c)(3) organization. WellPoint is a multi-billion dollar company.
- Ask your friends and family to join you in sending e-mails to WellPoint.
The only way to deal with CFS is to understand it better. This can’t happen without the active participation of CFS patients. Dr. Natelson
When it rains it pours. All of a sudden clinical trials are showing up all over the place. Keeping in mind patient recruitment is often one of the most expensive parts of a study let’s see what’s going on.
The Synergy Trial
“The Synergy Trial will evaluate the safety and efficacy of a currently available medication (methylphenidate) combined with a CFS-specific dietary supplement (CFS Nutrient Formula) to treat Chronic Fatigue Syndrome (CFS).”
This trial combines a broad-spectrum micronutrient supplement containing vitamins, minerals, and other cofactors (amino acids, antioxidants, and mitochondrial cofactors) with a low-dose CNS stimulant (methylphenidate).
The researchers believe the combination of a catalyst, low-dose methylphenidate, in combination with more ‘cellular fuel’ will spark the production of energy. When they provided the combination to ME/CFS patients, “many patients reported rapid and sustained reductions in fatigue as well as improvement in concentration (brain fog) when measured by the Checklist Individual Strength questionnaire and other patient-reported outcome measurement tools.”
“The Synergy Trial seeks to confirm these preliminary findings, expand on the observations made in prior research studies, and further explore the safety and efficacy of using these products.
The Synergy Trial will enroll 120 participants at four (4) research sites throughout the United States. The duration of the study intervention is 12-weeks. Sites currently include:
- Palo Alto, California (Stanford University)
- Manhattan, NY
- Salt Lake City, UT
- Fort Lauderdale, FL
Click here to find out how to enroll.
Severely Ill ME/CFS Patients Wanted!
Dr. Natelson in New York and Dr. Lapp in Charlotte are looking for severely ill patients to take part in the multi-center CDC sponsored study..
Dr. Natelson states - Sponsored by CDC who has asked us to reach out to find severely affected, bedridden CFS patients to complete our questionnaires and undergo physical exam. CDC wants to study these patients because little is known about them due to their marked disability. Based on their location, the Center nurse practitioner would try to come to their homes. If the patient were able to come to our offices on Union Square in Manhattan, that’d be even better. Filling out the questionnaires would take several hours, but they don’t all have to be completed on the initial visit — just within a week’s time.
Dr. Lapp states - We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp (email@example.com ) with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!
Dr. Natelson’s Neutraceutical and Brain Study
This study looks at brain function and chemistry. They would love patients to do a spinal tap to collect spinal fluid (but it’s not necessary). Participants will be offered one month of treatment with a neutriceutical [N-Acety Cysteine]. Patients volunteering for this study are asked to come back to the city for repeat testing after the treatment.
Go to www.painandfatigue.com website to download, complete and then send in the HEALTH SCREEN FORM. After they have received it and reviewed it, they’ll contact you.
Dr. Sonya Marshall-Gradisnuk Wants Your Blood – To Look for a Biomarker
Griffiths University is the home of Dr. Sonya Marshall-Gradisnuk and her ME/CFS research group at the National Centre for Neuroimmunology and Emerging Diseases. (If anybody can find an immune biomarker – they can. :))
Please call (07)56789283 or email firstname.lastname@example.org for more information and to organise an appointment.Participants blood collection site are in Gold Coast and Brisbane area:
1. Robina Hospital,
2. NCNED Center (Griffith Univeristy on Parkland Drive)
3. Logan Hospital
4. Royal Women Brisbane hospital
5. Tweed HospitalAs this study is commencing in November, please contact us directly as dates are filling up.Thank you
- Check out The Next Generation of Fibromyalgia -The Clinical Trials for information on currently recruiting fibromyalgia trials.
Dr. Rowes’s Heart Rate and Blood Pressure Study
A simple two hour visit and some followup is all that’s needed in Dr. Rowe’s study at the Johns Hopkins Bayview Medical Center Study. You’ll get $100 for participating. Call Malini at (410) 550 9826 or email her Mmon2@jhmi.edu for more.
IACFS/ME Conference Registration is…..Open…
Registration is now open for the 11th Biennial International Research and Clinical Conference to be held in San Francisco, California, USA, March 20-23, 2014. The conference is co-supported by Stanford University and will be held at the Parc 55 Wyndham Hotel.
- For more information on the conference and registration: http://www.iacfsme.org/
Conferences/2014Conference/ 2014ConferenceRegistration/ tabid/533/Default.aspx
- For hotel information: http://www.iacfsme.org/
Conferences/2014Conference/ 2014Hotel/tabid/538/Default. aspx
New York ME/CFS Conference Gets Attention
‘CFSAC’ Says No to Changing or Stopping IOM Contract
It’s not clear who ‘CFSAC’ is, and I imagine some members would be mortified to find themselves even indirectly included in the IOM contract process (particularly since they weren’t consulted in the first place :)), but ‘CFSAC’ has spoken. In a statement that didn’t address several questions and probably left no one outside of themselves satisfied, CFSAC clarified a few issues, but mostly made it clear (without actually saying so) that the contract is going forward – end of discussion.
‘CFSAC’ would clearly rather the discussion end with that, but it’s not happening. Check out Jennifer Spotila’s response here. We’ll have a blog coming up soon.
New CFIDS Association Prez Says Hello
An at times emotional Carol Head talks a bit about her struggle with ME/CFS decades ago and unacceptably slow the progress at understanding and treating ME/CFS has been, and her commitment to push it forward.
She has some big shoes to fill. Few people knew ME/CFS research, policy (and fund-raising!) like Kim McCleary did. (In fact, I’ll bet there are few researchers that were better informed about ME/CFS research than Kim McCleary. Carol Head’s background is in social media and marketing.
The CFIDS Association also has a new online home at SolveCFS.org
FDA Fibromyalgia Stakeholder Meeting Coming Up Soon – Take the Survey
If you have fibromyalgia be sure to take this survey to inform the FDA of how effective the current treatments for FM are
Health Rising News
Thanks to everyone who’s supported our November $5 Recurring Donation Fundraising campaign that’s raised about $250 in new recurring donations.
The Campaign ends in nine days; if you haven’t joined yet, please help keep Health Rising afloat and moving upwards by contributing just $5 month. Check out our recurring donations tab on the right hand side of all pages. Just click Subscribe to start the process.
Thanks for all your suggestions for the early release of the Practitioner Review. We’ve made several fixes and are continuing work on it. We’ll keep you informed.
The Canary Crows….
Speaking of the ‘Canary’ in the room, this remarkable, block-buster campaign started off hoping to raise $50,00o, and ended up raising the entire $200,000 they needed to produce their film. What an incredible out-pouring of support the ME/CFS Community showed for this exciting project.
Check out Jennifer’s Brea’s tired and heartfelt thank you….