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Funny in a tragic way


Decennial ME/CFS patient
Portland, OR
I'm in the process of reading the minutes from the Chronic Fatigue Syndrome Advisory Committee, which are very long so I'm reading the in chunks. I'm just finishing the chunk related to Social Security and you can feel the frustration among the members of the CFSAC with the lackey SSA sent to the meeting who is giving them absolutely NO information AT ALL. Dr. Oleske's response made me laugh my ass off, in a tragic sort of way:

I don't know if you have a sense of it, but the committee is really unsatisfied with the answers that you're giving us.

It also shows how much those members care about what's happening to us, even as our government so clearly does not.

SSA Update

Dr. Laurence Desi, Medical Officer, Office of Medical Policy
Accompanying Document: Programs Operations Manual Section DI 26510.015 Completing Item 16A and 16B (Primary and Secondary Diagnosis, Body System Code and Impairment Code) on the SSA-831

I looked over the minutes from the October 2008 CFSAC meeting and I have nothing to add or expand upon from that. To my knowledge, SSA does not have any specific programs involving CFS that are receiving ARRA funding.

Committee Discussion

Dr. Klimas: As I recall, there were two major issues at the October 2008 CFSAC meeting. One was the speed with which disability cases are reviewed and awarded. I would have hoped that the stimulus money might have helped speed up case review. The other issue was regional differences between approvals and non-approvals. I think it's a question that's been asked many, many times in the many years that I've been on and off this committee, and I don't recall ever really getting a sense that we knew the answer to that. There's a sense among the disability attorneys whom I talk to that there are some locations where a patient would rather not have this disease and hope to get Social Security approval and locations that are better.

Dr. Desi: With regard to the rapidity with which claims are adjudicated, I'm not aware of funding specifically for CFS claims, but in terms of claims in general, the SSA Commissioner is increasing the number of administrative law judges and support staff so that when somebody gets to that part of the appeals process, hopefully those claims will be adjudicated more rapidly. We're also ramping up our use of health information technology for processing all claims with the anticipation that processing will be more efficient and rapid. With regard to the regional differences, unfortunately I can't provide you any insight into why that may or may not occur.

Dr. Klimas: I'm concerned about that answer because it seems like that's something that could be easily answered-the rate of cases coming to review and their approval rate by disease. If CFS is the disease in question, there should be approval rates accessible. This very serious concern should be addressed by your agency.

Dr. Desi: All I can tell you is that we have taken the step of adding a specific impairment code for CFS so we can track that particular claim. In other words, if someone claims that as a disorder and the claim is adjudicated based on that disorder, then that would be tracked. It gets somewhat complex in that patients who have CFS may be awarded disability based on chronic heart failure. You're more likely to see the coding for chronic heart failure than for CFS. I can forward your request to management as I did with the other requests from the last meeting.

Dr. Jason: I just wanted to second what Nancy said. It would be very helpful if perhaps between this meeting and the next one, or at the next meeting and on an ongoing basis, you could provide this committee with those statistics. To the extent that we have that data, we can ask more specific questions.

Some studies that have been done with different illnesses show that CFS and FM often get rated at the low end in terms of prestige. I'm wondering whether medical and other personnel who do some of these SSA ratings might have differential attitudes towards these illnesses. Has that ever been studied, or do you ever have internal studies to look at potential biases in the evaluation process?

Dr. Desi: We evaluate complaints that come in. Our primary source of medical evidence comes from the claimant's treating sources. If that information is insufficient for us to make a determination, we may request additional information or get a consultative examination to further evaluate that individual. It's a very clear policy at SSA. We have a ruling that addresses CFS. Other than that, I'm not quite sure that I can address what your concerns are.

Mr. Newfield: When was that impairment coding first implemented?

Dr. Desi: I believe it was last year, although I'm not certain.

Mr. Newfield: What timeframe do you think would be appropriate for us to be able to get that data so that we can evaluate it and potentially interface further with you on those issues? Are we a year into that? Is it not yet a year? I know that we've been talking about the issue of getting the data for a number of years. Prior to that, you said there wasn't proper coding. Now that we have the coding in place, the question is how can we secure that information and work with it?

Dr. Desi: That would go through our management information system. That would be a query that I would have to pass up to senior management to have them respond to that. I can't make that assessment.

Mr. Newfield: Following up on Nancy's point on regional potential biases, from my experience, even within a region there are judge-specific biases, so I'm not sure you can really attribute it to any region or location. All of the judges bring their life experiences to adjudicating these claims whether it's in the SSA context or others. I'm not sure there's any useful information that we'll get from that.

Dr. Klimas: But as a clinician who takes care of a lot of patients from many different regions, I can say that there is a perception-and it might be just a perception-that there are some places where you will never be approved; there are some regions where there are no judges who perceive this and no judges who follow the guidelines that the SSA put forth. I think that you could take a look at data by region and then you certainly could go judge by judge. Is there a judge who has never approved a CFS case despite cases being in front of him or her?

In terms of cases that have some co-morbid conditions that are influencing the severity of the illness-there are a lot of such cases-that kind of thing will statistically even itself out. It's not a perfect tracking system that we would be looking at, but to not take a look at all because a system's not perfect, I think, is wrong. I would ask that you do put that query through so that you can bring the response to the next meeting.

Mr. Newfield: I want to further that and ask you, is it possible that we don't have to wait until the next meeting to get that information? Perhaps between CFSAC meetings our subcommittees could get that information so we can use it in terms of our agendas.

Dr. Desi: I'm wondering if the most expeditious way of answering these questions is for the committee members to formulate them as a list. Then it's much easier for me to take that list and send it up the proper management channels for a response.

Dr. Bateman: I was just referring to the minutes from the last CFSAC meeting. The very first thing that you said was that you'd formed an ad hoc work group to address the concerns of the CFS community and were reviewing the guidance you give adjudicators to make sure that the instructions are consistent with the current state of the art. I'm wondering if you could give us a specific report about this ad hoc work group, what the work group has learned, and what they're planning to do.

Dr. Desi: Unfortunately I can't give your more specific information other than to say that we will be looking at educational opportunities for adjudicators. With regard to specific regulatory guidance, that I can't comment on.

Dr. Oleske: Why you can't comment on it?

Dr. Desi: We're prohibited by statute from commenting on any pending, proposed, or considered rules or regulations.

Dr. Oleske: I don't know if you have a sense of it, but the committee is really unsatisfied with the answers that you're giving us. We were told at two previous meetings that SSA was going to make sure that there was a sense of fairness throughout the country in the adjudication of cases, that there weren't regional differences or biases, and that people with CFS had their needs assessed on the reports that the judges received rather than feelings that CFS is or is not an illness. We're past that, and yet what we're hearing at this meeting in 2009-after two years of focusing our concerns on patients with CFS being treated fairly by SSA-is very frustrating, I'll have to say.

I don't know what position you're in and how you were told what to say to us, but I'll have to say, we haven't heard anything new. There doesn't seem to be any movement on issues that are very important to the patients we either take care of or represent on this committee. I would hope that before the next meeting, we can be communicated with about this idea of regional fairness and appropriate adjudication of cases. That's critical if patients who are sick can't even get disability. I haven't heard that there has been a change. Give us answers, then.

Dr. Desi: The only answer that I can give is to tell you what official SSA policy is, and that's reflected in our CFS ruling. We recognize that CFS can be a medically determinable impairment provided there is proper documentation. That adjudicatory policy does not apply only to the states. SSA adjudication is set up as a Federal/state joint venture in which the states do the initial adjudication through the state Disability Determination Service (DDS). The CFS policy is the same whether the adjudication is done on the state level or anywhere up the appeals process within SSA. Those same rules apply to the administrative law judges (ALJs) as well. The ALJs operate independently of the DDS decision. In other words, each decision is a de novo decision.

Why there are regional differences and how judges look at that, I don't know. As I said, we base a lot of what we do-our determinations-on the medical evidence provided by the claimant, which comes from the treating source. I am sure that there are differences in the medical community, and depending on what medical information comes in, it may make a difference in how the case becomes adjudicated. Without looking at a specific case, it's hard to give you a specific answer.

With regard to the specific queries that you made, all that I can do is take that information and pass it up through management. I don't personally have access to that information. That's why I thought that perhaps the best way would be for the committee to formulate a specific list of questions that can then be sent forward.

Dr. Oleske: Two years ago, there was an issue about this, and an internal SSA working group was going to look into it. Dr. Bateman read it to you. Sure, we can generate a list, but two years from now it will be disappointing if we come back and the working group hasn't met.

Dr. Desi: I understand your frustration. Unfortunately, I'm not at management level; I'm at staff level, so all that I can do is pass that up to management level.

Dr. Jason: We have indicated at least a couple of questions, with regional variation and the adjudication process being central. Perhaps if we could again make that request, which three people have made today and others have made in the past, we can see if we can get some movement. There are lots of other questions we have that we would like to follow up on-in particular, as Jason indicated, individual variation, which I think might be even more insightful. The reality is, we have to start somewhere, and so if we could make this request to you formally and see if we can at least get something back from people above your office who can get this information to us, then we can start this dialog process and have further questions as well.

Ms. Artman: I think that there are a couple of very specific things that we would like to ask from your office. This can be an official suggestion, not a recommendation. To date, how many people with CFS have applied for Social Security disability? About four and a half years ago, we were told that between 700 and 800 people were approved and on Social Security disability for CFS, which given the number of people with this illness and how disabling it is, is shocking. I'd like to find out how many people have applied, how many people have been approved out of that number, and then the numbers that Nancy is talking about-is there a regional bias? Those three specific things would be very beneficial for this committee and for your administration to know.

Dr. Desi: There's a difference between regional bias and regional variation. There may be regional variation without regional bias. I think that it's important not to confuse the two terms.

Dr. Papernik: Are adjudication decisions in the public domain? Can you look up anywhere in the government database to find out how many people with CFS have been denied or adjudicated favorably for disability?

Dr. Desi: I'm not sure. My sense is that it probably is not, mainly because the database itself has personally identifiable information with the adjudication. For someone to use those records, they would have to be sanitized prior to use. That's not just for people outside the government. If we have research done by another government agency such as NIH, those records need to be sanitized before they move outside of SSA.

Dr. Snell: Last meeting there was a discussion about SSA starting to do coding for illnesses such as fibromyalgia (FM), Lyme disease, and CFS. We made a formal request to see if we could get a list of those codes so that we could actually see some of the illnesses that share some symptoms with CFS and ask questions other than those directly related to CFS. Is it possible to get those codes before the next meeting? Give us the whole code list, and then we'll decide what we think might be under the rubric of CFS.

Dr. Desi: As I said, I think that it would be appropriate for the committee to make a formal request. I think that it would get a better response. I don't know if anything from this committee has gone directly to the Commissioner of Social Security. I've taken information from our previous discussions and sent it up through my chain of command. That's the limit to what I can do.

Dr. Snell: It's important that we know that if we make a formal request verbally in this meeting, is it a formal request or do we actually need to put it in writing?

Dr. Desi: I would put it in writing.

Dr. Oleske: I think that we have that responsibility. We've done that already, but I think that we need to do that again on this particular issue.

Mr. Newfield: You're saying that we should direct our attention directly to the Commissioner with regard to these queries?

Dr. Desi: I'm the Social Security representative on this committee. If you have queries, if you send them to me, I will forward them up my chain of command. I'm not going to say that you can't directly query the Commissioner himself.

Mr. Newfield: We just want to know what's going to be most effective. We don't want to step on toes; we just want to get answers. What's going to be the most effective mechanism to accomplish that?

Dr. Desi: From my perspective, I would have to say to send me a formal written request and I will send it up my chain. If that doesn't get you a satisfactory response, then you may have no other recourse than to query the Commissioner himself.


Phoenix Rising Founder
I was there: that just drove everybody up the wall - it was like watching Orwellian speak in action. They thought they'd started something off - I can't remember - a year or two earlier - and it had gone nowhere. It's soooo frustrating but I think that guy did get the message. It was not pretty for him.

Finally the Committee got into an issue and dug at it and wouldn't let go. Often my impression is that they just move on to something else. They need to have two days four times a year not two days twice a year - its just not enough time given all they have on their plate.

That was an amazing conversation though. Thanks!


Senior Member
Depressing. Really depressing.

And, really, not surprising. Fits what I've seen.

What crap. What a royal waste of time.


Decennial ME/CFS patient
Portland, OR
Since I can't be there, I do try to at the very least read the minutes. Not that I really end up doing much with that information. But maybe someday when I'm feeling better...

And it is depressing. It's remarkable how the SSA rep starts with "I don't really have anything to say since the last meeting." Talk about just plain "taking the piss" as my boyfriend would say. What is cool is seeing how Drs. Oleske, Klimas, Jason, Bateman, and Snell really grill him. If it wasn't for the CFSAC, SSA wouldn't have anybody to give them a hard time.

But I agree that CFSAC meetings should be more frequent. And maybe, er, followed up on much more aggressively by a certain advocacy organization.