What should I expect at the disability doctor appointment?

[Sushi]

The only ace in the hole for CFS disability approval may be if the person is fortunate to get sick with Epstein Barr Virus as trigger.

Aside from your awkward wording above, what is your source for this Epstein Barr virus-as-a-trigger information?

 

[prioris]

Aside from your awkward wording above, what is your source for this Epstein Barr virus-as-a-trigger information?

the CDC has always listed high epstein barr titers as the only objective evidence for their disability guidelines. that is a well known historical fact. if you got other info that contradicts that then show me the source. the term trigger is used loosely

 

[Sushi]

the CDC has always listed high epstein barr titers as the only objective evidence for their disability guidelines. that is a well known historical fact.

Maybe you could give a quote as this is not well known to many of us.

 

[prioris]

1. Laboratory findings. At this time, we cannot identify specific laboratory findings that are widely accepted as being associated with CFS. However, the absence of a definitive test does not preclude our reliance upon certain laboratory findings to establish the existence of an MDI in people with CFS. While standard laboratory test results in the normal range are characteristic for many people with CFS, and they should not be relied upon to the exclusion of all other clinical evidence in decisions regarding the presence and severity of an MDI, the following laboratory findings establish the existence of an MDI in people with CFS:
   • An elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1:5120, or early antigen equal to or greater than 1:640;
     
     
   • An abnormal magnetic resonance imaging (MRI) brain scan;
     
     
   • Neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing; or
     
     
   • Any other laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record (for example, an abnormal exercise stress test or abnormal sleep studies, appropriately evaluated and consistent with the other evidence in the case record).

https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

 

[Sushi]

Thanks for the reference but there is a lot more in that document.

Diagnostic Symptoms. The CDC case definition requires the concurrence of 4 or more specific symptoms that persisted or recurred during 6 or more consecutive months of illness and did not pre-date the fatigue:

• Postexertional malaise lasting more than 24 hours (which may be the most common secondary symptom);
• Self-reported impairment(s) in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities;[14]
• Sore throat;
  Tender cervical or axillary lymph nodes;
• Muscle pain;
• Multi-joint pain without joint swelling or redness;
• Headaches of a new type, pattern, or severity; and
  Waking unrefreshed.[15]....
• Other Symptoms. Within these parameters, the CDC case definition, CCC, and ICC describe a wide range of other symptoms a person with CFS may exhibit:[16]
• • Muscle weakness;
    Disturbed sleep patterns (for example, insomnia, prolonged sleeping, frequent awakenings, or vivid dreams or nightmares);
  • Visual difficulties (for example, trouble focusing, impaired depth perception, severe photosensitivity, or eye pain);
  • Orthostatic intolerance (for example, lightheadedness, fainting, dizziness, or increased fatigue with prolonged standing);
  • Respiratory difficulties (for example, labored breathing or sudden breathlessness);
  • Cardiovascular abnormalities (for example, palpitations with or without cardiac arrhythmias);
  • Gastrointestinal discomfort (for example, nausea, bloating, or abdominal pain); and
  • Urinary or bladder problems (for example, urinary frequency, nocturia, dysuria, or pain in the bladder region).

 

[prioris]

most of all those are self reported symptoms. they amount to nothing in regards to proving disablement. it's an absolutely horror show guideline.

the epstein barr titer is the only objective and clear measurement that is actually spelled out.

in the last 25 years, the epstein barr cases tend to improve the odds that they will be approved. those are the ones that i have heard are approved.

most ME/CFIDS patients likely have abnormal brain scans if some type but that will likely go into the waste basket in terms of consideration. Some say around 10% have OI. not sure how many OI people get approved.

 

[Amaya2014]

I would argue the diagnostic criteria isn't so much the issue if a doctor has accurately identified a ME/CFS sufferer. The information on CDC is only to inform a claimant what SSA will accept as proof that CFS is a medically determined impairment.

The bigger question is how they then translate this impairment into disability. For me, the 1st disability evaluator didn't list CFS as my primary or secondary condition...they listed it as other. It was rated as severe, yet managed to get no further attention in regards to causing disability and even more importantly Residiual Functioning Capacity (RFC).

The 2nd evaluator didn't even list CFS as an impairment. In all fairness, organic brain disorder became my primary diagnosis (similar to how they evaluate MS patients) and rated severe. The brain disorder came from a neuropsych evaluation due to CFS- related slow processing speed.

Again, the RFC did not elaborate on how impossible it would be for me to maintain a full or part time work schedule due to fatigue that compounds and catastrophically disables my physical and cognitive abilities.

I asked this earlier but maybe it was overlooked. Has anyone here actually been awarded SSDI with CFS listed as the disabling condition? Thank you!

 

[prioris]

There is more than enough data on ME/CFIDS to make disability determination 90% objective based on laboratory tests, brain scans etc. The last 10% should just be the physician signing off on it. There should be no need for disability examiner to even see the person except to verify that they exist.

As far as saying, there is no problem with evaluation guidelines, that is wearing blinders to the massive disability denial rate for the disease. There is devastating carnage among the mountain of victims. When one isn't among those victims yet and living in squalor, one can sit on their hobby horse and minimize it wearing blinders.

Behind the scenes, they know most of the me/cfids/fms people they deny are sick. Disability reviewers get marching orders from above to deny. Not doing this will cause risk to their jobs and careers. I don't fault the disability reviewers. The problem comes from above them. This is the CORE PROBLEM. They can fix it pretty quick if they wanted to but they don't. One is also denying the cover up being waged against these diseases for the last 60 years. There are 60 years of victims. If we listed other diseases and conditions, the body count would be enormous.

 

[ahimsa]

Typically long-term disability coverage of depression and other things termed mental health has a two year maximum of benefits. Most LTD coverage requires that one file for SSDI and typically the LTD company pays for the attorney.

True, but I'd like to add that some ERISA LTD policies do not cover ANY mental illness at all. My own company's LTD policy had zero coverage for mental illness.

I did not have depression and I did not claim depression. I won my ERISA LTD claim based on some combination of medical evidence (e.g., tilt table test), several letters from various doctors, affidavits from my former co-workers and former boss, and a really good lawyer. And probably some luck.

Yes, ERISA LTD claims are very hard to win. Yes they may cancel it later and then you have to decide whether to continue fighting to keep your benefits. But that does not mean a person should just give up and claim a diagnosis of depression thinking that they'll never win an ERISA claim and the depression will help their SSDI beneifts claim.

Has anyone here actually been awarded SSDI with CFS listed as the disabling condition?

Short answer is yes, I think so.

When I filed for SSDI benefits I listed two diagnoses, CFS (I think I may have used the term CFIDS - it was 2000 - but SSA probably converted it to CFS) and Neurally Mediated Hypotension, a form of Orthostatic Intolerance.

I did NOT list depression since I have neither primary nor secondary depression. I realize that I'm lucky since so many seem to get either depression or anxiety and I don't have either.

My SSDI was granted on my very first try. It was either 8-9 months between the time I filed the paperwork and the money was deposited into my account. I did have to visit one of their doctors, and that doctor's report was not very favorable. But I was not denied, did not have to go before a judge, etc.

I guess had a lot of medical evidence (used the same evidence for SSDI that my lawyer helped me put together for the ERISA LTD claim) and that seemed to have worked. Also my husband filled out a bunch of forms to assess my ability to do ADLs (Activities of Daily Life).

One other thought is that I first got sick in 1990, kept working for 10 more years but took a lot of medical leaves during that time, and then finally filed for disability in 2000. Maybe the social security folks looked at that and thought it counted as failed attempts to work? Who knows? I know my age was not in my favor. I was only 39 when I filed for SSDI.

I think folks who live alone (no spouse, parents, siblings, etc.) have it much harder since there's no one to confirm that, yes, you really can't do <fill in the blank>. Having a witness helps.

 

[prioris]

True, but I'd like to add that some ERISA LTD policies do not cover ANY mental illness at all. My own company's LTD policy had zero coverage for mental illness.

One other thought is that I first got sick in 1990, kept working for 10 more years but took a lot of medical leaves during that time, and then finally filed for disability in 2000. Maybe the social security folks looked at that and thought it counted as failed attempts to work? Who knows? I know my age was not in my favor. I was only 39 when I filed for SSDI.

I think folks who live alone (no spouse, parents, siblings, etc.) have it much harder since there's no one to confirm that, yes, you really can't do <fill in the blank>. Having a witness helps.

I talked to two lawyers who specialized in CFS and I was told by both of them that if you keep on working beyond when you get officially get sick then you will likely be denied. They figure if you can still work when sick then your fit enough to work. They said it is better that people file as soon as they become sick. People who put up the valiant effort are penalized. Of course, looking back, the CFS disbility process is rigged to reject most people by design. Lawyers won't tell you.

If the insurance people know the disabled person is the sole financial support of their household, that is like blood to them and they will move in like sharks for the kill. This is why moving in with a financial support structure is absolutely critical if that is feasible.

Ideally I'd like someone to find out what the actual approval rate for each of the last 25 years is.

here is a quote of good news i found ...

I looked at which disabilities had the highest reversal rate on appeal; that is, which disabilities were often denied on initial approval but approved on appeal. A couple that stood out to me were chronic fatigue syndrome and carpal tunnel syndrome. For instance, out of a random sample from the disability research file, there were a total of 472 chronic fatigue syndrome claims. Out of these, 102 were approved at the initial application stage and 370 were denied (a 22% approval rate). After appealing, out of the 278 denials that were appealed, 76% of them were approved.

http://www.disabilitysecrets.com/resources/which-medical-conditions-are-most-likely-win-disability-a

can someone find the social security report mentioned in this. don't know the year.

Maybe things have changed. That would be good news if true. but it does say "random sample"

 

[ahimsa]

I talked to two lawyers who specialized in CFS and I was told by both of them that if you keep on working beyond when you get officially get sick then you will likely be denied. They figure if you can still work when sick then your fit enough to work.

I think it depends on what is meant by the phrase "officially sick."

The lawyers you spoke with may use that term to mean "the date used when filing a long term disability (LTD) claim." This is not the same date as "the date you first started getting symptoms" or even "the date you first got too sick to work." Some patients experience partial recovery or remission even after a period where they had to take a medical leave. Those lawyers may not understand that an illness can be relapsing/remitting, or can slowly progress over time and get worse, or some combination of these.

It's not always one day you are fine and the next day you can never work again. Some ME/CFS cases are like that but not all of them are.

If a patient, no matter what diagnosis, is trying to work AND is also applying for ERISA LTD or SSDI benefits *at the same time* then, yes, I agree that would hurt their chances of being approved for LTD. It does not make sense to be disabled and be working (although I'm sure there are patients who are right on the edge, probably making themselves sicker by doing too much). People reviewing a disability application would naturally think that if a person is still working then they are not sick enough to qualify as disabled.

One exception may be with short term disability benefits. A patient can set up work reduced hours for a period of time due to illness or injury and collect short term disability for the hours not worked. I was in that situation several times. But I never applied for any type of long term disability while I was working. Only short term disability.

When I finally did apply for LTD benefits, in late 2000, I used 2000 as the date when I became disabled. I used the same date for my ERISA LTD claim and for my social security disability claim. I completely stopped working about a month or so before I applied for benefits.

My illness may have started in 1990 but I would never use that as the date for the start of my LTD benefits! My disability start date was 2000.

 

[prioris]

I think it depends on what is meant by the phrase "officially sick."

The lawyers you spoke with may use that term to mean "the date used when filing a long term disability (LTD) claim." This is not the same date as "the date you first started getting symptoms" or even "the date you first got too sick to work." Some patients experience partial recovery or remission even after a period where they had to take a medical leave. Those lawyers may not understand that an illness can be relapsing/remitting, or can slowly progress over time and get worse, or some combination of these.

It's not always one day you are fine and the next day you can never work again. Some ME/CFS cases are like that but not all of them are.

If a patient, no matter what diagnosis, is trying to work AND is also applying for ERISA LTD or SSDI benefits *at the same time* then, yes, I agree that would hurt their chances of being approved for LTD. It does not make sense to be disabled and be working (although I'm sure there are patients who are right on the edge, probably making themselves sicker by doing too much). People reviewing a disability application would naturally think that if a person is still working then they are not sick enough to qualify as disabled.

One exception may be with short term disability benefits. A patient can set up work reduced hours for a period of time due to illness or injury and collect short term disability for the hours not worked. I was in that situation several times. But I never applied for any type of long term disability while I was working. Only short term disability.

When I finally did apply for LTD benefits, in late 2000, I used 2000 as the date when I became disabled. I used the same date for my ERISA LTD claim and for my social security disability claim. I completely stopped working about a month or so before I applied for benefits.

My illness may have started in 1990 but I would never use that as the date for the start of my LTD benefits! My disability start date was 2000.

They clearly meant sudden onset date. i clarified that with them.

There are many people who try to push thru the sickness. During the 90s, I was told that people who try to continue to work with disease may last two years and rarely 5 years. These days with better supplements and more knowledge, one may be able to put up a fight beyond that.

I worked in technical and engineering for around 30 years with 120+ symptoms most of those years. It was absolutely devastating. Rarely took sick days off either. Maybe once every 10 years when I got something like the russian flu I would go out sick. If I didn't cough, I would work. The cognitive symptoms would paralyze my mind so much along with FMS pain. Came so close to not completing my tasks many times. I learned to compensate the manure out of myself as a survival mechanism and do it in the nick of time to survive in everything i did. I never knew what the sickness was until my late 30's. Since I got the disease very young, it helped me figure out how to do things that other ME/CFIDS people couldn't do. I spent every school day in my life sick also. I felt very trapped and living on the edge of the cliff never knowing if i would fall off the cliff next day. Never went into poverty either but I did think many times I'd end up living in the street. So I had very unusual situation.

ME/CFIDS doctors didn't appear of the scene until late 80s. Later realized all those doctors all covertly worked for the government anyway. It was still very very very difficult psychologically to go on disability but I pushed myself tp do it in the right time and nick of time. Old age piles on more symptoms so I needed to find ways to cure them too.

i hope someone can find that social security report.

 

[Clerner]

It's crazy because I am honest and really suffering but I am going in there feeling like I am "guilty" because my condition is invisible and I don't think people have any idea of what hell i go through.

I am feeling exactly the same! My mental exam is on the 24th, and I am so nervous and scared. Did you have your appt. already? Let us know how it goes. I'm afraid to even wear makeup bc then I would look different on the outside compared to how I feel inside.

 

[KitCat]

I would argue the diagnostic criteria isn't so much the issue if a doctor has accurately identified a ME/CFS sufferer. The information on CDC is only to inform a claimant what SSA will accept as proof that CFS is a medically determined impairment.

The bigger question is how they then translate this impairment into disability. For me, the 1st disability evaluator didn't list CFS as my primary or secondary condition...they listed it as other. It was rated as severe, yet managed to get no further attention in regards to causing disability and even more importantly Residiual Functioning Capacity (RFC).

The 2nd evaluator didn't even list CFS as an impairment. In all fairness, organic brain disorder became my primary diagnosis (similar to how they evaluate MS patients) and rated severe. The brain disorder came from a neuropsych evaluation due to CFS- related slow processing speed.

Again, the RFC did not elaborate on how impossible it would be for me to maintain a full or part time work schedule due to fatigue that compounds and catastrophically disables my physical and cognitive abilities.

I asked this earlier but maybe it was overlooked. Has anyone here actually been awarded SSDI with CFS listed as the disabling condition? Thank you!

I just discovered this excellent thread. Lots of good info here.

@Amaya2014

Amaya, I totally agree with you, translating into functioning is KEY. I think the guidelines are confusing and lead people to believe that proving a CFS diagnosis is the key.

So... to answer your question...

yes, I also was approved for a diagnosis of CFS only, with no secondary conditions.

However, I was also approved a really long time ago, so I may not be the best example.

I only recently learned how to look up the code for what I was approved for and it was CFS.

If you don't mind sharing, I would love to know more...

Did you get approved for "organic brain disorder"?

What do you mean the first evaluator and the second evaluator?

What kind of neuropsych evaluation did you get? Was it by someone knowledgable about cfs? Was it covered by insurance.

++++

@ahimsa

thanks for sharing this. I am very happy to hear you were approved on the first time... good job...though I'm sure getting together everything for your LTD claim was not easy.

I would love to know more, if you don't mind sharing. I am collecting info from people on how they got approved.

You mentioned you had good medical evidence? I wonder if you remember what kind of medical evidence you had?

 

[frog_in_the_fog]

Lessons I learned for the next time I apply for disability:

1. Don't go it alone! Get professional help to navigate the process. You will save yourself time by seeking a trained advocate. The odds are against you from the start, so play it smart.

2. Having been through a physical examination for disability a number of years ago, they can't confirm your ME/CFS diagnosis. You may be in the eyes of the examiner totally fit and able to work.

3. The Neuropsychological evaluation for disability may show mental impairment, but this is not enough to show you are unable to work.

4. You must have your doctor provide evidence to completely support your disability claim. My mistake was not being able to find a doctor that was willing to support me.

5. Be prepared to wait, these things take a long time, especially if you need to appeal a denial. Could take two or more years.

 

[KitCat]

thank you @frog_in_the_fog . Great list.

I am sorry to hear you weren't able to find a supportive doctor. I agree this is really important.

where are you at now? are you planning to apply again?

 

[KitCat]

I am starting putting together blog post on this. It is a work in progress.

Corrections/suggestions welcome!

TEN STEPS TO WINNING A SOCIAL SECURITY CLAIM FOR CHRONIC FATIGUE SYNDROME

http://forums.phoenixrising.me/inde...m-for-chronic-fatigue-syndrome-ssi-ssdi.1978/



.

 

[ahimsa]

@ahimsa thanks for sharing this. I am very happy to hear you were approved on the first time... good job...though I'm sure getting together everything for your LTD claim was not easy.
...
You mentioned you had good medical evidence? I wonder if you remember what kind of medical evidence you had?

I don't have energy to go through my files so this is from memory. I filed in late 2000.

The main evidence was an abnormal tilt table test showing NMH (Neurally Mediated Hypotension, aka NCS, NMS, other names) plus a letter from the cardiologist who did the test. I also had a letter from my primary care physician.