February 2021

Welcome to our #MEAction Colorado newsletter.  We hope you find some valuable information in these newsletters.  If you want to contribute to our next newsletter or have comments and suggestions, please let us know. 


Lara Heisler, Editor   heisler.lara@gmail.com
Jim Lutey, Editor       jimlutey@gmail.com 
Disability Insurance 
Compiled by John Kelty, Chair, MEAction Colorado
The following is excellent advice from a person with ME (not in Colorado) who dealt with both Social Security Disability Insurance (SSDI) and Long-Term Disability (LTD). This person won their claims despite being younger.  SSDI rulings often favor older patients.
Many patients are not aware SSA has a 2014 reasonably updated ruling. Everyone applying for benefits should read the ruling. It will help educate them how SSA decides and what types of evidence to submit/they accept.  
There are many things people can do vs. things they can't control like which judge gets assigned. Think beyond the judge and focus on the evidence. SSDI - unlike private LTD under Employee Retirement Income Security Act (ERISA) - can be appealed up to the federal level. In particular, most people don't know getting letters of support from your family, friends, religious leaders, prior employer, etc., documenting your character and change in functional level can help. Keeping and submitting a diary of your symptoms can help. People think these are "subjective" reports and they are, but the ruling specifically says you can submit them.  
1) Review your doctors' notes if possible and clarify/correct any issues. Write your own BRIEF note documenting your symptoms/function for each visit and ask if your doc can include them in the records. Imagine you are a lawyer building a case. If you have good evidence entered already in the medical record and any SSDI submissions, that can be used to dispute any decisions. As with any legal matter, be careful of any deadlines to enter evidence. Put aside any feelings and approach it objectively from a judge's point of view.
2) The Yahoo group Disinissues has a lot of info about ME/CFS, FM, etc. Anyone can join. I don't know how active it is anymore: they had patients, caregivers, lawyers, and even former disability insurance folks giving advice.
3) Check out the library - even just online Nolo is a legal group that publishes all types of materials for the public including on disability. They're so good law students use them. Libraries often have Nolo and other SSDI-related materials. Persistence is Power is an excellent book although it's a bit hard to find.
4) Getting a good SSDI lawyer, preferably with a knowledge of ME/CFS, is important. A lot of people think you have to pay up front but SSDI lawyers work on contingency and most offer free consults. So take advantage of them and don't file on your own. Also, since SSDI is a federal policy, you can work with a lawyer who is not in your state; however you and they might still want to be in the same area to facilitate the case.  
What helped me many years ago was I had a very experienced lawyer with 2+ decades already dealing with ME/CFS. I did not have to explain/prove my illness to him and he helped me construct my case persuasively. Specifically, he had me fill out forms documenting that while I had better periods, they were not consistent/predictable/long enough where I could work regularly. He also advised me to be absolutely honest about my situation: if you can do something sometimes but not others, say that, don't just say Yes or No or merely tick the boxes you are given. Elaborate. (Most people are ashamed or embarrassed about their decreased function. Don't be: be honest).   
If you have private LTD, the LTD offers you a "free" lawyer but you are not obligated to use them: FIND YOUR OWN. They work for the LTD, not you. Anything you tell their appointed lawyer will be conveyed back to them and might be used against you in the future.  
5) For all the complaints about SSDI, at least the government's ideal goal is to be somewhat fair. Not so, private disability. Take everything private LTD tells you with a huge grain of salt and build your best case REGARDLESS of what they say. Remember the ideal goal of LTD companies is to make $$$, not help people. The goal of almost all businesses is to make $$ so I do not fault them for that necessarily but they are not your friends. When they pay out benefits, they LOSE money. People in those companies get bonuses when they deny benefits.
This is not my opinion: there are some people who have previously worked for LTD companies and they've written about what happens and why they eventually left. The strategy for how to work with LTD companies is slightly different from SSDI and the resources above cover some of that. There are also lawyers who specifically practice private LTD law who may or may not also practice pertaining to SSDI. Unlike SSDI, some LTD lawyers will ask for a retainer up front. The LTD lawyer I worked with briefly had already won a few cases concerning ME/CFS and was suggested to me. The LTD lawyer was quite expensive, but given what I had to lose, he was
really worth it.
Both law offices I worked with were ethical, polite, responsive, kept me appraised of deadlines/responses and filed everything on time.  If an office cannot do that for you, get a new lawyer. They also felt strongly about their role in helping disabled people.
6) Kantor & Kantor is one law firm that has been interested in ME/CFS. Andrew Kantor has been involved with a number of ME/CFS groups. They are PRIVATE LTD lawyers. Although I do not know their track record from the legal side, it is great they have decided to educate themselves about ME/CFS. They are based in Oakland, CA. Kantor works on contingency which means you do not pay up front.  
My suggestion: the better you prepare your case, the more likely any lawyer will take it. From their POV, they're taking a financial/opportunity risk when they take you on, so if you show you can/will help, they may view you more favorably. Also, for retainer-based lawyers, doing some of the non-legal parts (like gathering evidence) yourself can save you money.
Links & Guides for PWME looking for disability help  

Credits to:  
https://howtogeton.wordpress.com/ This comes very highly recommended from ME experts. "A self-advocacy guide for anyone who is homebound or bedbound in the US. Special focus on folks with Myalgic Encephalomyelitis. If you are not lucky enough to have ME or CFS, you are still welcome to use this guide. Enjoy!" Contains guides on financial survival while applying for disability, applying for home aids, applying for social security. A sampling of the links:
(9 minute YouTube from an ME-aware disability lawyer in Florida)
https://www.massmecfs.org/disability -- covers job accommodations; help with food, energy,
transportation, housing, etc.   
https://www.massmecfs.org/disability-handbook -- an 81 page PDF available for a suggested donation or free, covering disability overview and these steps of the process: application process, when to obtain a lawyer, when to apply for disability, doctors' letters, your description of the disabling effects of ME, contacting your Congressperson about your application.
Medically Documenting Disability in ME/CFS Cases
by Attorney Comerford and Dr. Podell on Disability.    
 A basic guide to ERISA [employer sponsored long term disability] claims for non-lawyers.
From another PWME: "Its important when working on a private LTD case to distinguish between ERISA and non-ERISA cases. ERISA cases tend to be tougher to win. I would make sure that if you do hire an attorney that they have expertise in ERISA. Below is an ERISA guide written by an attorney who won my ERISA appeal for me 4 years ago. If you do get denied, I strongly recommend you contact and ERISA attorney BEFORE filing an appeal." 
Disclaimer: The information contained in this site/article is provided for informational purposes only, and should not be construed as legal advice on any subject matter. You should not act or refrain from acting on the basis of any content included in this site/article without seeking legal or other professional advice.  

University of Colorado Health System  
By Tom Strobel, MEAction Colorado Steering Committee Member    

We've started working with the University of Colorado Health System to help people with ME.  Some of the advice for "Chronic Fatigue" found on their website is badly outdated and potentially damaging for PWME.

The University of Colorado Hospital located in Aurora, Colorado
Photo credit to Jeffrey Beall used by license at THIS link  
Our plan is to "utilize" the growing number of people with Long COVID to help our cause.  UC Health has plans to open a clinic for those who have had COVID and who continue to suffer with symptoms for months after. These symptoms are often, but not always, similar to ME symptoms.  As both Long COVID and ME tend to be post-viral syndromes, we think that any medical experience gained in treating Long COVID could translate well to treating PWME.  Certainly, we should hope for much less skepticism about our symptoms from medical professionals working in a Long COVID clinic.  That skepticism is often quite debilitating for PWME looking for help.
So, we've reached out to medical professionals at UC Health, requesting to talk to them about the items on their website that we've found problematic and to alert them to the increasing numbers of Long COVID patients that may be looking for treatment.  Once we get a dialogue started, we can discuss PWME that also need help.  So far, this has been a shotgun approach, where we e-mail UC Health people who we think may be able to assist us, and then wait to see the response.
At press time we have had one promising response!  A Physician's Assistant from The Center for Integrative Medicine responded, sounded quite interested and willing to help.  I had a great talk with her and will let you know what comes of it in next month's newsletter; so, stay tuned!
* Incidentally, "we" is Alison Sbrana of the Body Politic COVID-19 Support Group and a member of the Steering Committee of ME Action, Julie Rieskin of Colorado Cross-Disability Coalition, and myself.

Postcards to Doctors

Just a reminder for everyone that #MEAction is promoting the Postcards to Doctors, a medical education campaign.  HERE is the link for more information and how to send the postcards.  Please consider participating.   

Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO.  Follow us on Twitter and Instagram @MeactionCO
 #MEAction Colorado
Newsletter volunteers are NOT medical professionals; we are patients, allies and caregivers sharing our own experiences. What you do with the information offered is at your own risk and is your responsibility. Always try to work with a good doctor and/or medical professional and please consult him/her for your personal medical decisions. Please note that none of the information on this site has been evaluated by the FDA. It is shared for support and educational purposes only and is not intended to diagnose, treat, cure or prevent any disease or illness. Please do not make major changes in diet or exercise without discussing them with your physician and/or medical professional. Never begin taking any supplement without discussing it with your physician and/or medical professional, and never stop taking any prescription medications unless directed to do so by your physician and/or medical professional. The opinions expressed in this newsletter are those of the submitter and not of the newsletter volunteers or MEAction.