New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

What should I expect at the disability doctor appointment?

Discussion in 'General ME/CFS Discussion' started by sickntired771, Apr 7, 2016.

  1. sickntired771

    sickntired771

    Messages:
    83
    Likes:
    77
    I am so anxious about my upcoming appointment with the disability examiner. Will they even understand CFS or listen to my concerns at all. I have no idea how long it will be or what to expect. I feel so nervous. What should I do to prepare?
     
    Clerner and Jennifer J like this.
  2. prioris

    prioris Senior Member

    Messages:
    324
    Likes:
    225
    My advice to people with ME/CFIDS is to use depression as the reason for disabilty. It is something they understand and depression (cognitive dysfunction and fatigue) symptoms are encompassed by ME/CFIDS. Also be aware that for political reasons, they rather approve you for that than ME/CFIDS.

    ME/CFIDS disability is politically sensitive matter so anyone filing for that usually has a lot going against them on any disability review.

    As I remember 10 years ago, only 2000 people were approved in US for disability either per year or something - not sure. given that maybe a million have the disease, it makes getting disability virtually impossible. i don't know how much has really changed since then. maybe someone else knows. I know that Gulf War Illness soldiers get special treatment and exemption when they file. Most disability examiners were taught that this disease is a psychological disease and not real. There supposedly has been some change to that but I don't really know.

    I would start seeing a doctor for depression ASAP. If you are rejected, that should be your back up plan.

    Trying to prove to a disability examiner - fatigue - good luck. Hopefully they are more kinder and gentler with you. Hope you the best.

    p.s.

    A few other things. People are under the impression that the more things wrong you put down for disabilty that the greater ones chances of being approved. That only makes things more difficult for disability reviewers. Put down one disability only. Stay focused on that one thing. When your seeing a doctor on depression, stay focused on fatigue and cognitive dysfunction and don't mention except as an aside your other zillion symptoms.
     
    Last edited: Apr 7, 2016
    sickntired771 likes this.
  3. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,961
    Likes:
    22,186
    USA
    @sickntired771 I disagree with this and don't think anyone should use depression as their diagnosis unless it actually is their diagnosis (and then of course they should absolutely use it.)

    My understanding of SSDI from my attorney was that it is based on your symptoms and functional ability of what you can and cannot do. We based my case on that and I was approved on the first go-round. My disability doctor's appt was a physical exam in which it was obvious pretty quickly that I could not stand, walk or breathe without using a wheelchair.

    I attempted everything asked of me in the exam and luckily I was not asked to do anything that I felt was dangerous to my health or I would have declined (per my attorney.) I provided SSDI with all of the tests that I'd failed such as spirometry and pulmonary function tests, first Tilt Table Test (which was crappy and not nearly as thorough as the second one which I also failed but I didn't have that one yet), abnormal blood tests for viruses, thyroid, etc, abnormal V/Q scan, hospitalization for MCAS related issues, and letters from multiple doctors which spoke about me having POTS, dysautonomia, plus severely restricted pulmonary functioning that made it impossible for me to do basic activities of daily living let alone work.

    I had no idea what would happen but it seemed to be the correct approach and every word of it was the truth. I would think giving a diagnosis of depression if it is not real would be fraud (versus if it is real, then absolutely 100% state that.) Just my 2 cents in case that helps.
     
    ahimsa, Snow Leopard, MeSci and 3 others like this.
  4. Old Bones

    Old Bones Senior Member

    Messages:
    800
    Likes:
    4,765
    CANADA
    I absolutely agree with @Gingergrrl . I realize that few ME/CFS patients go to their disability examiner appointments armed with the amount of supporting medical documentation she has. But, disability can be, and has been, awarded with much less clinical proof. So don't be too concerned if you haven't had significant testing with abnormal results.

    If you have a supportive, knowledgeable doctor, and if you are concerned the testing might include activities that would cause harm, your doctor may be willing to provide a written exemption. This happened for me at a re-evaluation assessment, although my doctor took the initiative. He knew the test would involve four consecutive
    hours on a treadmill the first day, and three hours the second day -- this despite the fact I had always held a desk job. He wrote a note that I was not to do a treadmill test. Since this was all they had planned for me, after much discussion they sent me home. Perhaps their intent was to kill me!!! Regardless, my benefits were continued.

    Another issue in the above situation was "informed consent" -- or rather, "uninformed consent". Before the appointment, I was expected to sign a document agreeing to do all rehabilitation they prescribed based on the results of their evaluation. At this point, I wasn't even aware of the intended "treadmill torture test". I marked up the consent form, indicating I would not, and could not, agree in advance to unspecified rehab; and further, that no rehab could be prescribed without my doctor's prior approval. It seemed no one had previously refused to sign this release form without editing it.

    Probably the only advance preparation you can do is carefully consider how your condition impacts your ability to do your job, or any job. Make notes, and review them frequently until they are clear in your mind. Comparing yourself to the functional capacity charts available on various ME/CFS websites to determine where you "fit" may help.

    Most of all, tell the truth. That way, you won't slip up if they attempt to discredit your words. I recall reading advice (after the fact) to tell disability insurers as little as possible. I did the opposite. I told them everything, with the hope that a doctor reviewing the details would come up with a different, curable/treatable diagnosis. This didn't happen; but, perhaps my detailed records were difficult to dispute in the absence of conflicting evidence.

    I, also, would advise against giving depression, or any other false condition, as the reason for your inability to work. Depression can be treated, ME/CFS not so much. Some disability policies/programs exclude, or limit, coverage for mental illnesses. Regardless, if we want ME/CFS to be taken seriously, we need to acknowledge its reality, and not hide behind other more accepted diagnoses.

    @sickntired771 I wish you all the best. Do let us know how things go.
     
  5. sickntired771

    sickntired771

    Messages:
    83
    Likes:
    77
    Thanks guys, do you think it would be inappropriate or even "rude" to bring letters from my actual doctors stating my disability to this doctor? I don't want the doctor who knows nothing about me to think I am trying to cloud their judgement or force their decision but I think it would be important for me to bring some of my medical records to them and certainly letters from my doctors stating my limitations.
     
  6. Old Bones

    Old Bones Senior Member

    Messages:
    800
    Likes:
    4,765
    CANADA
    @sickntired771 No, not inappropriate, and definitely not rude. I can't stress enough the importance of having support from doctors who have a longer-term view of your health condition. Take everything relevant you have. Make it available, but don't force it on the examiner -- something you wouldn't do anyways, based on my perception of you.

    Another thing . . . try not to frame the appointment in an adversarial context before you even get there. I had the advantage of not being exposed to decades of scepticism and abuse when I was first ill more than 25 years ago. So, I approached all appointments with a mindset of trust -- that the other party would be ethical and fair. And, in most cases, that was my experience. This will be more difficult for you, I realize. But, being outwardly defensive isn't helpful. In my situation, the independent medical examinations I was sent to (as opposed to the rehab appointment described above) ended up providing the strongest support for my disability claim. They're not all "bad guys", and assuming they are will make an already stressful situation worse. So, go expecting the best from them, but with an awareness in the back of your mind that things may not go your way.
     
    Clerner, ahimsa, Valentijn and 4 others like this.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,904
    Likes:
    12,520
    Cornwall, UK
    I don't think that depression can always be treated.
     
  8. prioris

    prioris Senior Member

    Messages:
    324
    Likes:
    225
    Depression like symptoms that are in ME/CFIDS can't be treated. Some antidepressants have the toxic fluoride in them to boot. Has anyone found a cure for the crippling cognitive dysfunction. One would have to find a way to treat the neuro inflammation and repair the damage.



    This is VERY POOR ADVICE. During the Alaskan gold rush it was estimated that only 100 people out of 100,000 actually made money. The rest failed. Focusing on that 100 who succeeded and sweeping the 99900 who failed under the rug is just wearing blinders. If someone wants to go hunt for gold with those odds against them - good luck. they will need it.

    One thing you had going for you was the wheel chair. Most people with this disease don't use wheel chairs. Probably relatively very few.

    As far as disability attorneys especially with chronic disease, almost all are useless. I can give people with this disease way more valuable advice on disability than any disability attorney. They won't be the ones who fill out the disability forms and answer the questions. You will. They are not needed during initial and first appeal. Bringing them in on hearings makes more sense. Of course

    Your attorney said that it is based on your symptoms and functional ability of what you can and cannot do. You don't need an attorney to find that out. There is no way to prove something like that. Ones medical tests are useless also unless one has eptein barr. In the end, it's all like a judicial inquisition and the ME/CFIDS patient is on trial. If they float, they are guilty - if they drown, they are innocent. The process is absolutely horrible.

    Some people know the date they started getting sick. Others don't because it was gradual. Date of onset is also another barrier.

    If one wants to file under ME/CFIDS and proceed to put their head in a political vice grip, well, good luck to them
     
    Last edited: Apr 8, 2016
    sickntired771 likes this.
  9. Denise

    Denise Senior Member

    Messages:
    1,094
    Likes:
    3,435
    Using depression (rather than ME/cfs) as a diagnosis is often NOT a good idea especially if one is dealing with long-term disability (LTD) as well as SSDI.
    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.

    SSDI determinations are based on residual functional capacity https://www.ssa.gov/OP_Home/cfr20/416/416-0945.htm and symptom impact.
    Social Security updated their ME/cfs ruling in 2014 and it can be found here https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html.
     
    ahimsa, Amaya2014, Valentijn and 2 others like this.
  10. prioris

    prioris Senior Member

    Messages:
    324
    Likes:
    225
    This is just plain perverted logic. This is not giving a false condition.

    There is NO OFFICIAL TEST that has been approved by the government that can distinguish between the two conditions.

    There is NO OFFICIAL TEST that can objectively diagnose ME/CFIDS. It is for practical purposes SUBJECTIVE when all is said and done when it is put under the criteria of disability review. Depression is the same way except that the process is much more kinder and gentle. In depression disibility , your cognitive dysfunction counts. Under ME/CFIDS, it counts for nothing.

    There are scans to show that ME/CFIDS people have brain inflammation but in disabilty reviews that means nothing. There are a ton of other medical abnormalities. It would make the entire process very objective if they based it on such clear medical evidence BUT they don't and won't. Behind the scenes, they are fully aware of this reality of this disease BUT they want to keep the disease as VAGUE as possible. This disease is politically sensitive. Anyone filing needs to adjust to these political realities. Until they accept concrete medical evidence where subjectivity is eliminated then you should go the easier route. THIS IS THE POLITICAL REALITY YOU HAVE TO SWALLOW.

    Understand that this disease devastates people financially. Many people have little to no support. They can be close to living in a card board box on the street or living in one now. This is about pure survival. You don't want to get involved with useless disability attorneys either. You also won't have to take some test like running on a tread mill or something for post exertion. Also finding a disability doctor for depression is way way easier than finding a ME/CFIDS specialist. Plus you will be working with the system as opposed to against it.
     
  11. prioris

    prioris Senior Member

    Messages:
    324
    Likes:
    225

    Most people who work and get LTD disability insurance are covered under ERISA laws. I will give you some AWFUL reality about ERISA.

    If you file a ERISA claim to a private insurance company especially with any long term condition, it is in their financial interest to throw you under the bus. Why is that ?

    Let's say you file a claim in 2010. Let's say the insurance company drags the case out to the year 2030 and they lose. They don't owe you any money for between the years 2010 ad 2030. Your first payment starts the day you win. Hence company LTD benefits are more useless for people hit by chronic diseases.

    They will pay if it is short term or just a couple years but chronic conditions they will play hard ball. The insurance companies know that many people are under a bad financial situation so they will bide their time and let the chronically ill twist in the wind. During this time, things will become more desperate for people hence some may settle with insurance company for pennies on the dollar. Others will use up their savings Others will borrow here and there hoping the siege will end in time. Others will end up living in a box. Others will commit suicide. Tens of thousands of people have found this out the hard way.

    Congress is fully aware of this situation but has done nothing to change these laws. Somebody is going to say that the insurance companies are doing this because they are paid off. No. This is by design.

    If one becomes chronically ill with this disease and one has loving parents, family friends etc who will help then this is what one should do. I know going back home to live with parents etc can be a psychological blow but the fact that they love and support you puts one in a good situation to withstand the financial pressure. also minimize personal possessions. they just become useless clutter. you won't have energy for them any longer. figure out what is really important and get rid of the rest.

    There are many people in opposite situations where there is lack of love and support. That is just one more big thing that can go along with this disease. You my already know your family is dysfunctional but when you fall into a hole, whatever you didn't know, all that negative energy comes out. People will tend to love support you when your strong and have more going for you. People will tend to hate and despise you when your weak and when you have less going for you. These people are like sociopaths. They make up most of this planet

    If one has a NON ERISA insurance policy (not a company, your own) then you have the advantage of suing for damages hence all that lost back pay. It becomes in the insurance companies best interest to treat you more fairly.
     
  12. prioris

    prioris Senior Member

    Messages:
    324
    Likes:
    225
    Some other advice

    Under social security, people who do more physical work will get better approval odds when their age 50.
    For non physical work, that creeps to age 55 but the reality is that one it i kind of blurry.

    Filing when your under the age of 49 is more difficult but once you hit 49 and file, things become easier. That is just the system.

    The state you file under could also be a factor.

    If you have a wheel chair or missing 4 limbs, that probably improves your odds for approval but most people don't have that going for them.

    People make the mistake of spending a lot of time on personal hygiene and clean clothes the few times they go out of the house. This is a big mistake when your applying for disability. You should look the way you feel on the inside - a complete mess. I know it is awful to appear this way but you won't help your chances by appearing in front of your doctor and social security people by having impeccable personal hygiene - neat hair, clean clothes and clean body. The worse your hygiene in appearance the better.

    Imagine your working at a job and you do perfect job every day except one day. During that one day, your boss comes by and says - that person is doing a terrible job. He didn't notice the other ones. That leaves an impression in his mind. The same with your doctor and social security. Appear like you are inside. It may go against all your ingrained habits but that i what you must do. Disability reviewers will never see how messy your house is. Neither will they see how you can't leave your house much. Or lying in bed most of the time. You want outside appearances to match how sick you are on the inside.

    You also want them to know on the questionnaire how difficult normal life is with just maintaining your home and fixing your meals and shopping are a struggle.

    I hope this helps someone.
     
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,961
    Likes:
    22,186
    USA
    I disagree that my advise is poor and I think encouraging someone to lie and give a diagnosis of depression if it is not true is fraud and hurts that person as well as those applying who truly have major depressive disorder or bipolar disorder, etc.

    I was advised very well by my atty who I recommend highly. I did everything they advised and was approved the first time. It is obvious to anyone who sees me that my breathing is impaired and my muscles are weak and as much as I hate having to use a wheelchair, I do not have a choice.

    I am not choosing to use it or "lucky" or "fortunate" to use it. I have to use it if I want to get around my apartment even from bedroom to bathroom.

    I had thought I was supposed to focus on a diagnosis(es) but atty told me it was based on functional impairment such as that I can no longer drive, walk, carry things, or breath, and with the added MCAS I could not eat at that time but this part thank God is greatly improved.

    I told this disability doctor how much I had loved my career and if there was any way humanly possible to improve my breathing I would return to it some day which was my dream. He said it was obvious how ill I was and wished me good luck b/c he was just doing the exam, he was not the decision maker.

    He ended the exam with, "if you were my patient, I honestly would have no idea how to treat you or get you better but I hope you win your case."

    If I had been asked to do a treadmill or even a PFT in that appt, I was advised to decline per my atty but honestly would have even against atty advise b/c was not going to do anything to injure myself further.

    If I had written depression it would have been complete fraud in my case and the exam would have been a psychiatrist exam vs. a medical one. I am only reporting what happened for me and each person has to decide what is right for them.
     
  14. prioris

    prioris Senior Member

    Messages:
    324
    Likes:
    225
    In your OWN mind it may be perceived as false but not to me, the psychiatrist doing the diagnosis, the disability reviewer or likely other people. But maybe you don't have fatigue and cognitive dysfunction either so who am I to say. Those two symptoms are hallmarks of depression disability criteria. If one doesn't have them then don't apply for it.

    If one goes to a psychiatrist and one convinces them that one has cognitive dysfunction (which is real) and fatigue (which is real), they will diagnose that person with depression. THIS IS NOT FALSE according to their disability criteria. Just because you think you have ME/CFIDS, you need a doctor to anoint that. It's not what YOU think. Even if one mentions that they think have a ME/CFIDS, a psychiatrist can over rule that diagnosis. It's about getting on disability so you can get some financial support. Some people may think they have Lyme. When the landlord asks you to pay the rent, he doesn't care what disease you went on disability for. It's moot once you get on it. What diagnosis you use is irrelevant when all is said and done. You need financial support. Period. You need to go the easiest route. You can still see a ME/CFIDS doctor after that all you want. It's about being PRACTICAL. Some psychiatrists understand the predicament of the person with ME/CFIDS. They can be compassionate and helpful.

    More advice

    It may be psychologically very difficult for you to apply for disability. This is where one must bite the bullet and get the process going. It will take 6 months of seeing a doctor before one can apply. So take the first step. There may also be a lot of anxiety in you also but you need to fight thru that. You should view it like the boat is sinking as it takes on water. You should not waste time since it is a long process and time may be running out for you.
     
    Last edited: Apr 8, 2016
  15. prioris

    prioris Senior Member

    Messages:
    324
    Likes:
    225
    IF someone has FMS and a doctor can agree then one could maybe use that disability route as an alternative. Just another route to consider. Much better than going down the ME/CFIDS route. This would help with the 2 year LTD limitation.
     
  16. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,961
    Likes:
    22,186
    USA
    It is not only false, it is fraud IMO but I think we will have to agree to disagree.

    I do not have fatigue or cognitive dysfunction and there is no scenario in which I would lie and say that I did. I worked as a social worker in mental health for 12 years (prior to getting ill) and I know what the DSM criteria are for every possible depression diagnosis from schizoaffective disorder to substance induced depression. Fatigue is vague as someone can present with an agitated depression or even depression with psychotic features. It is quite difficult to get SSDI for depression in my experience of working with patients. Most were significantly impaired and very ill but this was no guarantee of SSDI approval.

    When I first became ill, I went to an integrative psychiatrist b/c I did not know myself what was wrong or where to start. He said I did not have depression in his opinion but he suspected both thyroid and autonomic problems and he was correct on both counts. He referred me to an Endocrinologist who confirmed I had Hashimoto's and from there I saw a cardiologist and have been trying to solve this and get better for three years. It has been my life goal with laser focus to solve this if I can and for me, saying I had depression when I did not would not have served any point and would have been dishonest. (Again if I truly did have depression, this would be a different issue and I would not have hesitated to use depression as my diagnosis for SSDI.)

    I disagree as my long term disability plan through my employer (which I paid into for 12 years) requires on-going documentation from my doctors (separate from the SSDI portion) and if I am going to be receiving treatment and be providing them with this proof or evidence, not only do I want it to be honest, I want the treatment that can best help me. For me right now this is neurological, autoimmune, cardiology, mast cell, and autonomic treatments. Nothing useful would come of me seeing a psychiatrist which would be required if I had put a false diagnosis.

    I don't want to go in circles and my feedback may not be helpful. But having worked in social work my whole career and now being a very ill patient, I have seen both sides of the process. I felt my atty gave me great advise and am glad I followed it. Like I said, this may not apply to anyone else.
     
    Valentijn, MeSci and AndyPandy like this.
  17. prioris

    prioris Senior Member

    Messages:
    324
    Likes:
    225
    I understand why you took your route. Give that wheel chair a hug ... lol

    I think I said everything I needed to say so this thread can take a rest. Just remember people that there are multiple routes to disability. You pick which one is most practical and doable for your situation.
     
  18. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    1,948
    Likes:
    4,894
    USA
    I've had three Social Security disability examination - one to get on benefits and the other two were continuing disability examinations. They are designed to be an interview with set questions that the examiner asks and you respond. Think of it as being a witness in a court case. You answer questions. In addition to questions, they might do a physical exam.

    Social Security has already (or will) ask for copies of your medical records from the providers you mentioned in your application. Unless you overlooked someone, there's usually not a need to provide them with any other documentation.

    They may ask you "How does your disability affect you?" You can prepare yourself by thinking in ways of how you would respond to that. Think of your WORST day, not your average day.

    Private disability insurance may have different ways of doing things. They will also have copies of your medical records from providers you mentioned in your application.

    I've heard that some doctors don't like to write letters saying someone is disabled, simply because they are not disability evaluators. They can summarize what's already in your medical chart and perhaps make other statements regarding your ability to function.
     
    Last edited: Apr 8, 2016
    ahimsa, Amaya2014 and Snow Leopard like this.
  19. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,961
    Likes:
    22,186
    USA
    I assume you do not mean this to be offensive or minimize my suffering but I took the route I described not only b/c I was advised by an excellent SSDI attorney but because it was the truth. And I use the wheelchair because I have no alternative. I would be bedbound without it and by using it I can get to doctor appts and maintain some quality of life with my husband and child. It's not a choice or a prop.
     
  20. prioris

    prioris Senior Member

    Messages:
    324
    Likes:
    225
    I was just being humorous. Nothing negative was meant towards you. I completely understand that you need your wheel chair. Now my view of lawyers ... that is another story.
     
    Last edited: Apr 9, 2016
    Gingergrrl likes this.

See more popular forum discussions.

Share This Page