Yes. Once nomem remembers, I'll list them.

Hmm. December 31. My anniversary. The night I got CFIDS. Twenty two years ago.

Such special ways to welcome in the old New Year. A sleep clinic. I suppose that means we'll both be in stage 4 restorative sleep at midnight. What a peaceful celebration.

you are the luckiest person I know to be at the Cleveland Clinic on New Year's Eve, can I go with you?

A slumber party.

You could have a look at www.chronicneurotoxins.com. There's a tab there on the left with lab tests and requirements. Not sure how much help it would be, unless someone at the clinic knows what they're looking at. But it might give you some ideas...some of them are usual, like SED rate, that sort of thing.

MRI's are ok. But usually all they show is ubo's. If you want ot for SSDI or LTD coverage, they will cheerfully ignore it. Otherwise, they just get used for proving you don't have a brain tumor or something else. I got SPECT scans based on some wrong info I was given by a doctor's office. They turned out to be very valuable to me, but SSDI is ignoring them and LTD argues them outright (but - they will argue a heart attack if you send them the corpse by parcel post). Shoemaker is using PET scans, but I think you'd have to have them read by someone in his group, since he is apparently working on items specific to this illness.

There are specific Pulmonary function tests - go look at Cheney's stuff on immunesupport. The pulmunologists have no idea what they're looking at on the regular tests. They're likely to say deconditioning and they don't see what happens to you after the test is over. I'm sure the clinic knows all this stuff and can point you in the right direction.

That's kind of the prob with an illness that's mainly ignored when it's not being denied outright. If you're doing the tests to satisfy yourself and your own doctor, all good. If you're planning to use them to convince anyone else, just do it knowing you do need to have all the documentation you can get, but you're still going to have a fight on your hands. A written analysis of the collected results whatever tests you get from your doctor is worth a lot in that case.

Thanks, you guys. My own doctor needs the backing of a Cleveland Clinic diagnosis in order to help me fill out my LTD paperwork. I will ask my disabilities advocate if I should ask for THEM to help me fill it out!

Good luck!! Let all of us know the outcome of your trip.

If you have an advocate, they should be doing this for you anyway. They know what to say and what not to say.

Just a thought, I am expecting my disability advocate to TELL me what else I need done to get on to SSD. They should know what the court requires and what kinds of tests are deemed productive at getting good results. Somebody PLEASE correct me if I'm wrong here. I'm counting on these people to direct me. I am praying soooooo hard that this goes well. You are my friends. Help me out if I'm off the mark. Thanks, Love you, Darla

I can't claim to be an expert on all these things - that's why I hire lawyers and physicians, myself. I have managed to pick up some information along the way, so here goes:

I can tell you for certain that SSDI and private LTD are two different matters. Worker's Comp is a whole other dimension, and depends on the laws in your state or country.

Social Security doesn't care WHY you are disabled. You don't have to prove any particular illness or injury. What you have to prove is that you are too disabled to be gainfully employed. They use a long list of accepted impairments. You must either meet those, or have equivalent impairments of some kind The rules are byzantine, to say the least! I know of people were successful in getting a first-off approval on their own. But they went in armed with a wealth of knowledge as to how that all works. The paperwork is a royal headache and a half. I would suggest hiring an advocate or lawyer to do this for you. Best resource I've found is
http://groups.msn.com/SocialSecurityDisabilityCoalition/general.msnw?action=get_message&mview=&ID_Message=24423
(That's the Social Security Disability Coalition on msn.com.)

Private LTD is governed by the policy you purchased, and if you got it through your employer, is usually governed under ERISA law. You got whatever they sold you - and that will often include exclusions and limitations for CFS. You don't have to prove HOW you got sick, but you do have to come up with a diagnosis that won't cause more problems than it solves. This again is byzantine - and run by people who do NOT want to pay out on claims. Usually, the policiy demands 'objective tests'. You can get those, but you can also bet the LTD carrier will find a way to dispute the validity of those tests. The sooner you can hire an advocate or attorney, the better off you will be, generally speaking. Best resources I've found for dealing with LTD carriers are:
the fixingdisability group on yahoo.com and corporatecrimefighters.com.

I know this is NOT what you might like to hear! And no one is sorrier than me. I'm still fighting for both. It's expensive, it's time-consuming, and it sux that these goods and services have been made so inaccessible to us - especially after we have already paid for them in good faith. BUT - that said, if you ever needed someone on your side, this is definitely it! If you could really do all they demand, you'd probably just get a regular job. You may do better by shopping around, but take expertise, success rates, and service over savings. In this case, it's worth it. Be sure to ask around. The people in these groups have used various services themselves and can give you first-hand opinions.

Here's hoping each and every one of us gets what we paid for!

Agreed, Serena. I don't expect anyone to win this for me. I know I'm in for the long haul. I am applying for both LTD from my employer as well as SSDI. I k now I'll eventually get the SSDI, but it's the LTD I want. There are no exclusions for CFIDS but I DO have to have objective tests. What objective tests should I ask for?

Advocates are sometimes very kind. Attorneys are sometimes good at knowing what's required for getting CFIDS SSD or CFIDS LTD.

What's a scam is that they need to know what the judge who's in charge of overall disability (SSD & LTD)-- at the timee -- likes to use as empirical evidence. It's great if an advocate or an atty. has read the cases. Has seen various cases. Somewhere. Wherever. But the win depends on who's sitting at the desk, at the time. An advocate and an atty. have to make a case that takes into consideration the audience. That appeals to the judge. I got rid of my first atty. once I realized that fact. My first atty. had me lose 3 times plus the first appeal. Then I got a second atty. Happened to be the president of Association of Attys. for the state. Knew who's on first. What's on second. Said, so and so likes attys. who come prepared who a TILT table test and an IQ test. If 'we' have those, 'we' win. Case closed. I took the tests. Followed the insiders' rules. Without even having to appear in court, 'we' won. Cased closed.

That does NOT mean those tests are what work for this time. That was back in '97. That does not mean those tests will work in your state. For the judge presiding your state's gossip group of attys.

It's pathetic, political, a total scam. But that's the marrow of medicine and politics.

I don't believe the crap about how you have to lose three times before you win SSD or LTD for CFIDS. That may have been true 9 yrs. ago. May. Not necessarily. But I don't believe it's the case today. If your atty., or advocate-closely-connected-to-atty., knows what someone at the head of table wants to eat at these times, you can win the first time.

You want to win the first. Once you win, you won't see your winnings anyway for quite some time. So you want to add yrs. onto that time? I don't think so.

The site given by one of the comments above, neurotoxins, is about the most thorough and accurate. But I agree: It depends on who's reading the tests. And, it depends on who is in charge at the time.

Expecting anyone else beside yourself to get your win doesn't happen. You have to squeeze your advocate or atty. to make sure it happens. You have to be in charge of your advocate or atty.

The sleep clinic is great. It does NOT mean it will help you w/ your judge in your state. Find out what's needed for YOUR state's system.

The fact that there is all this frenetic energy and worry and subsequent complete and utter exhaustion about something that's real but still not believed is sick. It's as sick as you are. And that my friends is a crime.