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Re: “Cort Johnson Interviews ME/CFS Victor Martha Kilcoyne”

Thanks Cort. Great interview. I did the "push/crash" cycle for 10 years before collapsing into severe ME/CFS. Three years later I began to emerge from that hell with a new appreciation for the absolute necessity that I "re-write the script." This means that I do a 180 on how I view and approach life. This has been an extremely difficult task for my "type A" personality.

I used to scoff at the "graded exercise" idea because exercise was obviously making me more ill, and to prescribe it as a treatment of recovery sounded insane. (It is insane if not done right.) But now, being well enough to do more than just make my bed in the morning, I can see the truth in that the most important tool in my bag of tricks for healing ME/CFS is to stay strictly within MY energy envelope and to follow a VERY disciplined and cautious graded exercise program.

Of course there are other things that I do, such as supplements (Vitamin B12, Immunopro, Ultra Clear, etc.) and my personal spiritual/emotional program - but the graded exercise has become top priority for me. I used to scoff, but experience has opened my mind. Today on my journey thru this illness I feel pretty good as long as I stay within my stress boundaries. I am successfully increasing my activities and, I am actually working part time (after 4 years of total disability).

And just like Martha, I am more grateful and humble. I am going to get her book. It aligns with a lot of my own experience with recovery from ME/CFS. – rossman

Keeping Tabs on Ampligen^R

Re: “FDA accepts antiviral drug Ampligen for review as first-ever ME/CFS (‘chronic fatigue syndrome’) therapeutic”

Thanks so much for quickly posting the latest update regarding Ampligen's status I check the Internet, and particularly your site, daily for new info on Ampligen and its slow trip through the FDA. I'm keeping my fingers crossed, and hopefully the next time we hear about Ampligen it will be to announce its approval! – Lolly

Resources for Working at Home

On the topic of working at home, The National Telecommuting Institute is an organization that works with each state's Vocational Rehab outfit for training funding for jobs using computers, headsets, and high speed Internet to do customer service for the government and catalogue sales. [See “How to Apply to NTI Jobs.”]

John Tesh's Radio Program/website frequently has answers for those who wish to work at home.

The topic of working at home utilizing NTI and Voc Rehab will be my support group's July topic, with the guest speaker being from the Virginia Department of Rehab Services. – D.C.

Impact of ME/CFS in the Family

Last week’s “Question of the Week” was: “If you have ME/CFS or FM, does a close blood relative also have it?“ (63% yes; 37% no) If you answered “yes,” the next question was: “What has been the impact on your family?” Following are a few of the responses we received:

• Based on my symptoms, I realize my mother, now deceased, had undiagnosed Me-CFS and FM. My diagnosis of ME-CFS and FM has been confirmed by physicians. Because of my illness I moved in with my sister. I now see her with similar symptoms and am trying to assist her with finding adequate medical help. Not an easy task as she is as stubborn and strong willed as me. However, after 4 years. she is now making some changes. My family has been very supportive. I feel very blessed.
• Women are primary caregivers and symptoms for both were ignored by males in family.
• We are all considered crazy, I guess.
• My relatives have been a tremendous source of understanding and support because they've been there.
• It puts a strain on the family because we can't help each other out as much as we'd like to since it's mother and daughter who both have FM and daughter is 28 with 2 young children of her own.
• Try to handle it with doing research and keeping each other informed. I sometimes feel guilty though that my daughter ended up with this too and it may have been passed by me.

Social Security Disability Advice

I received SSDI two months after I applied. (Shocking, I know!) I waited four years after I stopped working before I finally applied. That is not advisable! Here is my advice, based on my experience.

• Before you apply for disability benefits, look at your Social Security Statement showing your earnings history and benefits estimate that is sent to you every year. You can get a copy at your local Social Security office if you don't know where you put yours. This is the document that shows your wages over your lifetime. Check it carefully, and get corrections made if needed. Once you apply, they will not/cannot give you this statement. I found out that my file was frozen while I had an open claim. Once it was approved, I was able to get my statement. Make sure all your work income is on there, as that determines your benefit amount.
• Apply as soon as you can and don't let the application expire. Retroactive benefits are paid for only one year back from the date of your application. It is very common to be denied twice then the third time, you appear before a judge at a disability hearing. This is where most people are approved. Don't give up!
• Build up a medical file. I used the local county's indigent care program to get free medical care since I did not qualify for Medicaid. If you need financial help to see doctors, find out if your area has this type of program. You could contact a public hospital and ask them if they are aware of any programs like the one I was on, offered by your city, county, or state. I had to submit financial information and a denial from Medicaid, so that was my first step and quite easy. You must see doctors to build a documented case for your claim.
• Give detailed examples of your limitations. One of the questionnaires is about your limitations. Spend time on this, be specific about how your life has changed, how easy/difficult it is to care for yourself, your family, your house, working, sleeping, eating, showering. Mention how it affects your friendships, relations, hobbies, and quality of life. I was very specific. I used several pages to detail little things – even how I have to lie down after I take a shower, to rest before getting dressed.
• I registered with the Dept of Assistive & Rehabilitative Services. I insisted that I wanted to work (which I did - and still do!) I was accepted as a client, then I was sent for various evaluations to determine my limitations and abilities. Their doctors determined that I was not a good candidate for work. The money they would spend to help me work from home or have a special accommodations at a job would be wasted, as I would get too sick too soon. I was scheduled for a test of my physical ability. As it turned out, my SSDI claim was approved the week before I was supposed to go in for the testing, but I made sure that they knew my mom was coming in from out of town to care for me and my son after I crashed, since I knew I would. I requested that the testing be done over several days, but they refused. I made a big deal about that. I can't be sure, but perhaps the fact that I was willing to do the test but concerned about the post-exertion fatigue would have helped support my case if it hadn't already been approved.
• If you get referred to a psychologist, ask to be sent to a neuro-psychologist. The one I was sent to did the usual mental interview plus the IQ tests. She also did the hand-grip test. I think this was a big key in approval of my disability claim. It proved weakness in my upper arms.
• I stressed that I would have post-exertional fatigue, and I requested an appointment the next day so they could document the change. I made a big deal about that - how the test was not fair because they were not tracking me the next day. They refused the request for the next-day retesting, but I think my concerns were noted.
• I attached the document, SSR 99-2p: POLICY INTERPRETATION RULING TITLES II AND XVI: EVALUATING CASES INVOLVING CHRONIC FATIGUE SYNDROME to my package. (The link is on the Disinissues website or here - http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html)
• I attached a form from my state Dept of Health & Human Services on which my doctor rated me with temporary disability. My doctor was not very helpful and would not help me in any way with my medical file or write any reports, but this was a simple form that he just signed. He didn't have to write up a report. I don't know if that helped but I imagine that it did, despite its being rather lukewarm about my being unable to work.
• I had help filling out the questionnaire and I noted that. Also, I made a big deal of needing ample time to fill out any paperwork and asked my Social Security rep to send me any required forms early as it would take me forever to fill things out due to brain fog.
• I received help from the Yahoo group called Disinissues. They are a wonderful group and they helped me navigate and gave me confidence. I did not use a lawyer or service. Actually, I applied to get a file open, then I was going to use Allsup or find an attorney but I was approved within 60 days so I didn't have to find help, which was good as I didn't have to pay anyone.
• I don't consider my medical file having anything obvious in it - typical invisible Chronic Fatigue/Fibromyalgia. Not much testing was done - some positive viral tests and mycoplasma pneumonia. but that's it.

Don't give up! – Marti

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Note: This information has not been evaluated by the FDA. It is generic and is not intended to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.