CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

[V99]

I suggest that someone contacts those responsible for monitoring Soc. security and ask them, what happens now?

 

[acer2000]

Posted this on Cort's article, but it fits here too:

ok, help me out folks. (sorry if this belongs in the other thread. I guess I have to post it twice.)

Doesn't Soc. Security recognize CFS as a diagnosis that can cause disability to the point of not being able to be "gainfully employed"?

OK, and doesn't Soc. Security require objective tests to show the person has the diagnosis? And this is true even for CFS?

So, then why does CDC say there is no objective biological test?

Am I mistaken?

Tina

Having/not having a biomarker does not necessarily correlate to the degree of disability a disease is associated with or the ability to prove objectively the level of disability.

In my experience, disability providers care less about the actual DX/bloodwork and more about "objective evidence" of actual disability. For example, even though there is no objective biological marker for "CFS", if you have objective evidence of cognitive impairment, reduced energy levels, and symptoms that impair your ability to work, thats what they pay attention to. Ways to demonstrate this are standardized cognitive testing, SPECT scans that are abnormal (and consistent with the cognitive testing), and reduced V02max and Anaerobic Threshold on exercise testing.

A good example is MS. The dx of MS doesn't get you disability just for having the disease (or Oligoclonal banding/MRI evidence - the "biological markers" of MS). Some people with MS are not disabled at all (or minimally so) for a good portion of their illness and can work with no problems. But some are disabled to the point where they can't work.

In other words, its usually the degree of objectively demonstrable disability caused by the dx, not the dx itself that gains you disability. No matter what the dx is you have to measure/demonstrate this using accepted tests in order to get approved.

Of course having a biomarker would add credibility... but its not really the metric they go by to decide if you can't work.

 

[Sean]

Of note, a risk factor is not "the cause" of a disorder; it increases the relative risk, but is not present in all cases. The cause of CFS is still unknown, but childhood trauma might be factor that contributes to CFS risk in a subset of people. While these findings are important and have the potential to help many people, it is important to realize that not all persons with CFS experienced maltreatment as a child. Childhood maltreatment is just one risk factor for CFS and does not explain how other people with CFS (who did not experience such trauma) developed the illness.

I see nothing objectionable in that. IIRC, you find the same thing in a lot of disorders that are accepted are organically based, like MS. If childhood trauma increases the general background risk for various disorders, then so be it. I don't have a problem with that.

It does not mean that it is the primary cause, or make it a primary psycho-somatic disorder. Just that it makes it somewhat more likely you will get it, or get a worse version of it, or make it harder to deal with if you do get it.

If anything that highly qualified statement from the CDC is distancing themselves from the more hardcore psycho-somatic school. Which is fine by me.

One step at a time.

 

[V99]

The problem is that they don't know who they are defining.

 

[Greggory Blundell]

No, Sean, they have a superb pr team. They are playing with words, but their sport injurs us. This is a very bad thing. An insulting thing. We are being redefined, and they benefit. But the true ruse lies in their attempt to eschew blame for 25 years of neglect. I can see the collective smirk...

 

[Tammie]

I see nothing objectionable in that. IIRC, you find the same thing in a lot of disorders that are accepted are organically based, like MS. If childhood trauma increases the general background risk for various disorders, then so be it. I don't have a problem with that.

It does not mean that it is the primary cause, or make it a primary psycho-somatic disorder. Just that it makes it somewhat more likely you will get it, or get a worse version of it, or make it harder to deal with if you do get it.

If anything that highly qualified statement from the CDC is distancing themselves from the more hardcore psycho-somatic school. Which is fine by me.

One step at a time.

I would not see anythign objective in it if it were, in fact true; however, this theory has been disproved by more than one study.....the original "study" showing this did not have a control group! when they actually compared to the rate of people who were abused and did not develop ME/CFS, there turned out to actually be fewer people who had gone on to develop ME/CFS after getting abused than there were that did not develop it....there was at least one more study done after this that also showed that people with ME/CFS do not have any higher rate of previous abuse than those without it

 

[usedtobeperkytina]

I know that whether you get disability has to do with the level of how much it disables you. ...also, whether your disability prevents you from being able to work if you were retrained.

But, this is from the Wisconsin ME/ CFS Website:

Mistake #5: Assuming your diagnosis will win your claim. It won't. It's true that SSA needs a diagnosis. But SSA also needs medical proof that your diagnosis causes limitations that are so significant and severe that they preclude your ability to work full time on a sustained basis.
Advice: Disability cases are won based on your limitations, not your symptoms. Make sure you provide detailed medical records from your doctor that reflect your symptoms, his diagnosis, and your limitations.


So, if your diagnosis is CFS, then according to CDC, what medical proof would I get that this diagnosis is causing disability? hmmmm? There is no biological test to show limitations due to CFS, right?

According to the Soc. Security document SSR 99-2p which gives their specific policy on CFS:

However, the Social Security Act (the Act) and our implementing regulations require that an individual establish disability based on the existence of a medically determinable impairment; i.e., one that can be shown by medical evidence, consisting of medical signs, symptoms and laboratory findings. Disability may not be established on the basis of an individual s statement of symptoms alone.

This Ruling explains that CFS, when accompanied by appropriate medical signs or laboratory findings, is a medically determinable impairment that can be the basis for a finding of "disability." It also provides guidance for the evaluation of claims involving CFS.

..... (a few paragraphs later)

At this time, there are no specific laboratory findings that are widely accepted as being associated with CFS. However, the absence of a definitive test does not preclude reliance upon certain laboratory findings to establish the existence of a medically determinable impairment in persons with CFS. Therefore, the following laboratory findings establish the existence of a medically determinable impairment in individuals with CFS:[4]

* 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.

Mental findings that establish the existence of a medicallydeterminable impairment

Some individuals with CFS report ongoing problems with short-term memory, information processing, visual-spatial difficulties, comprehension, concentration, speech, word-finding, calculation, and other symptoms suggesting persistent neurocognitive impairment. When ongoing deficits in these areas have been documented by mental status examination or psychological testing, such findings constitute medical signs or (in the case of psychological testing) laboratory findings that establish the presence of a medically determinable impairment.

(end quote)

Now, if CFS patients can use these objective tests to show impairment due to CFS, then why can't these same tests be used to show diagnosis of CFS? How can you be impaired by testable biological abnormalities of a disease that are not part of that disease?

Sorry, but SSA and CDC need to go into a room and figure this out. One way or another. Can't be both ways.

By the way, I plan to call CDC Monday and ask them how they distinguish between ME and CFS.

Tina

 

[usedtobeperkytina]

I take

I take issue with the theory that comes out of (or was basis for) this study.

The claim is that childhood trauma may have warped the wiring of these folks so they can't handle stress normally. But they included many people with psychological conditions in this study. So the figures are skewed.

As Klimas said, for research, you narrow your cohort to only those with clear case of the disorder. Later, when you have objective tests, you can diagnose others that don't fit the very narrow criteria. CDC did the opposite.

Tina

 

[V99]

Yes, this study was not only distasteful, but it is insulting to those who have been abused.

 

[SOC]

I would not see anythign objective in it if it were, in fact true; however, this theory has been disproved by more than one study.....the original "study" showing this did not have a control group! when they actually compared to the rate of people who were abused and did not develop ME/CFS, there turned out to actually be fewer people who had gone on to develop ME/CFS after getting abused than there were that did not develop it....there was at least one more study done after this that also showed that people with ME/CFS do not have any higher rate of previous abuse than those without it

Agreed. As the statement stands, it sounds fine; you see the same thing is other illnesses. The problem in my mind is that they state as established fact a limited and controversial conclusion. Irritating, but probably not worth fighting at this point. It may be their way of trying to legitimize some of their bogus research, but it will lose credibility as real research verifies the causes and effects of ME/CFS. We might want to fight all this in a consolidated effort in the near future, when we are in a major power position. At the moment it's a mosquito.

Fortunately this is not the UK/Wessely. We are in a much better position thanks to the WPI. Reeves has already lost some credibility, so everything the CDC comes up with is no longer irrefuteable.

It's going to be annoying in the relative short term while CDC fights to cover its behind, but I think a strategic pause while they dig themselves into an even deeper hole and our position strengthens is advisable. Our wonderful advocates can be collecting and stockpiling info for a big CDC knockdown.

 

[Sean]

I would not see anythign objective in it if it were, in fact true; however, this theory has been disproved by more than one study.....the original "study" showing this did not have a control group! when they actually compared to the rate of people who were abused and did not develop ME/CFS, there turned out to actually be fewer people who had gone on to develop ME/CFS after getting abused than there were that did not develop it....there was at least one more study done after this that also showed that people with ME/CFS do not have any higher rate of previous abuse than those without it

Fair point. My comment was just a general one about risk factors, not specifically about ME/CFS. Should have made that clearer. I am still no fan of the CDC.

 

[Greggory Blundell]

It's not the study, it's the aired results. They have just marginilized us even more. Worse, we know what they are doing. Cant someone call cnn? This is a criminally obvious manipulation of reality. They are playing with us as if we are kids. We need to be pissed!

 

[birddog]

However, the Social Security Act (the Act) and our implementing regulations require that an individual establish disability based on the existence of a medically determinable impairment; i.e., one that can be shown by medical evidence, consisting of medical signs, symptoms and laboratory findings. Disability may not be established on the basis of an individual s statement of symptoms alone.

CDC will be quoted by insurance companies to refuse to pay for medical proof testing.

 

[muffin]

Social Security Admin info on CFIDS. Google for far more info - Will this change?

Have to make sure that SSA hasn't changed anything on CFIDS definition/ruling: Google SSA and CFS, etc. and there is a TON of info on how to win cases with CFIDS and/or FM. But pay attention to how the SSA defines/regards CFIDS.
====================================================
SSR 99-2p
EFFECTIVE/PUBLICATION DATE: 4/30/99
http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html
SSR 99-2p: POLICY INTERPRETATION RULING
TITLES II AND XVI: EVALUATING CASES INVOLVING CHRONIC FATIGUE SYNDROME (CFS)PURPOSE:
To restate and clarify the policies of the Social Security Administration for developing and evaluating title II and title XVI claims for disability on the basis of Chronic Fatigue Syndrome (CFS), also frequently known as Chronic Fatigue and Immune Dysfunction Syndrome.

CITATIONS (AUTHORITY):
Sections 216(i), 223(d), 223(f), 1614(a)(3) and 1614(a)(4) of the Social Security Act, as amended; Regulations No. 4, subpart P, sections 404.1505, 404.1508-404.1513, 404.1520, 404.1520a, 404.1521, 404.1523, 404.1526-404.1529, 404.1560-404.1569a and 404.1593-404.1594; and Regulations No. 16, subpart I, sections 416.905, 416.906, 416.908-416.913, 416.920, 416.920a, 416.921, 416.923, 416.924, 416.924b, 416.924c, 416.926, 416.926a, 416.927-416.929, 416.960-416.969a, 416.987, 416.993, 416.994, and 416.994a.

INTRODUCTION:
CFS is a systemic disorder consisting of a complex of symptoms that may vary in incidence, duration, and severity. The current case criteria for CFS, developed by an international group convened by the Centers for Disease Control and Prevention (CDC) as an identification tool and research definition, include a requirement for four or more of a specified list of symptoms. These constitute a patient's complaints as reported to a provider of treatment.

However, the Social Security Act (the Act) and our implementing regulations require that an individual establish disability based on the existence of a medically determinable impairment; i.e., one that can be shown by medical evidence, consisting of medical signs, symptoms and laboratory findings. Disability may not be established on the basis of an individual s statement of symptoms alone.

This Ruling explains that CFS, when accompanied by appropriate medical signs or laboratory findings, is a medically determinable impairment that can be the basis for a finding of "disability." It also provides guidance for the evaluation of claims involving CFS.

POLICY INTERPRETATION:
CFS constitutes a medically determinable impairment when it is accompanied by medical signs or laboratory findings, as discussed below. CFS may be a disabling impairment.

Definition of CFS
CFS is a systemic disorder consisting of a complex of symptoms that may vary in incidence, duration, and severity. It is characterized in part by prolonged fatigue that lasts 6 months or more and that results in substantial reduction in previous levels of occupational, educational, social, or personal activities. In accordance with criteria established by the CDC, a physician should make a diagnosis of CFS "only after alternative medical and psychiatric causes of chronic fatiguing illness have been excluded" (Annals of Internal Medicine, 121:953-9, 1994). CFS has been diagnosed in children, particularly adolescents, as well as in adults.

Under the CDC definition, the hallmark of CFS is the presence of clinically evaluated, persistent or relapsing chronic fatigue that is of new or definite onset (i.e., has not been lifelong), cannot be explained by another physical or mental disorder, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities. Additionally, the current CDC definition of CFS requires the concurrence of 4 or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have pre-dated the fatigue:

Self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities;
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;
Unrefreshing sleep; and
Postexertional malaise lasting more than 24 hours.
Within these parameters, an individual with CFS can alsoexhibit a wide range of other manifestations, such as muscleweakness, swollen underarm (axillary) glands, sleepdisturbances, visual difficulties (trouble focusing orsevere photosensitivity), orthostatic intolerance (e.g.,lightheadedness or increased fatigue with prolongedstanding), other neurocognitive problems (e.g., difficulty comprehending and processing information), fainting,dizziness, and mental problems (e.g., depression,irritability, anxiety).
Requirement for a Medically Determinable Impairment

Sections 216(i) and 1614(a)(3) of the Act define "disability"[1] as the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment (or combination of impairments) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.[2] Sections 223(d)(3) and 1614(a)(3)(D) of the Act, and 20 CFR 404.1508 and 416.908 require that an impairment result from anatomical, physiological, or psychological abnormalities that can be shown by medically acceptable clinical and laboratory diagnostic techniques. The Act and regulations further require that an impairment be established by medical evidence that consists of signs, symptoms, and laboratory findings, and not only by an individual's statement of symptoms.

Under the CDC definition, the diagnosis of CFS can be made based on an individual s reported symptoms alone once other possible causes for the symptoms have been ruled out. However, the foregoing statutory and regulatory provisions require that, for evaluation of claims of disability under the Act, there must also be medical signs or laboratory findings before the existence of a medically determinable impairment may be established.

Establishing the Existence of a Medically Determinable Impairment
The following medical signs and laboratory findings establish the existence of a medically determinable impairment in individuals who have CFS. Although no specific etiology or pathology has yet been established for CFS, many research initiatives continue, and some progress has been made in ameliorating symptoms in selected individuals. With continuing scientific research, new medical evidence may emerge that will further clarify the nature of CFS and provide greater specificity regarding the clinical and laboratory diagnostic techniques that should be used to document this disorder.

Because of this, the medical criteria discussed below are only examples of signs and laboratory findings that will establish the existence of a medically determinable impairment; they are not all-inclusive. As progress is made in medical research into CFS, additional signs and laboratory findings may also be found that can be used to establish that individuals with CFS have a medically determinable impairment. The existence of CFS may be documented with medical signs or laboratory findings other than those listed below, provided that such documentation is consistent with medically accepted clinical practice and is consistent with the other evidence in the case record.

Examples of medical signs that establish the existence of a medically determinable impairment
For purposes of Social Security disability evaluation, one or more of the following medical signs clinically documented over a period of at least 6 consecutive months establishes the existence of a medically determinable impairment for individuals with CFS:

Palpably swollen or tender lymph nodes on physical examination;
Nonexudative pharyngitis;
Persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points;[3] or,
Any other medical signs that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record.
Examples of laboratory findings that establish the existence of a medically determinable impairment
At this time, there are no specific laboratory findings that are widely accepted as being associated with CFS. However, the absence of a definitive test does not preclude reliance upon certain laboratory findings to establish the existence of a medically determinable impairment in persons with CFS. Therefore, the following laboratory findings establish the existence of a medically determinable impairment in individuals with CFS:[4]

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.
Mental findings that establish the existence of a medically determinable impairment
Some individuals with CFS report ongoing problems with short-term memory, information processing, visual-spatial difficulties, comprehension, concentration, speech, word-finding, calculation, and other symptoms suggesting persistent neurocognitive impairment. When ongoing deficits in these areas have been documented by mental status examination or psychological testing, such findings constitute medical signs or (in the case of psychological testing) laboratory findings that establish the presence of a medically determinable impairment.

Individuals with CFS may also exhibit medical signs, such as anxiety or depression, indicative of the existence of a mental disorder. When such medical signs are present and appropriately documented, the existence of a medically determinable impairment is established.

Evaluation
General. Claims involving CFS are adjudicated using the sequential evaluation process, just as for any other impairment. Once a medically determinable impairment has been found to exist (see discussion above), the severity of the impairment(s) must be established. The severity of an individual's impairment(s) is determined based on the totality of medical signs, symptoms, and laboratory findings, and the effects of the impairment(s), including any related symptoms, on the individual's ability to function.

Also, several other disorders (including, but not limited to, FMS, multiple chemical sensitivity, and Gulf War Syndrome, as well as various forms of depression, and some neurological and psychological disorders) may share characteristics similar to those of CFS. When there is evidence of the potential presence of another disorder that may adequately explain the individual's symptoms, it may be necessary to pursue additional medical or other development.

Step 2. When an adjudicator finds that an individual with CFS has a medically determinable impairment, he or she must consider that the individual has an impairment that could reasonably be expected to produce the individual s symptoms associated with CFS, as required in 20 CFR 404.1529(b) and 416.929(b), and proceed to evaluate the intensity and persistence of the symptoms. Thus, if an adjudicator concludes that an individual has a medically determinable impairment, and the individual alleges fatigue, pain, symptoms of neurocognitive problems, or other symptoms consistent with CFS, these symptoms must be considered in deciding whether the individual's impairment is "severe" at step 2 of the sequential evaluation process and at any later steps reached in the sequential evaluation process. If fatigue, pain, neurocognitive symptoms, or other symptoms are found to cause a limitation or restriction having more than a minimal effect on an individual's ability to perform basic work activities, the adjudicator must find that the individual has a "severe" impairment. See SSR 96-3p, "Titles II and XVI: Considering Allegations of Pain and Other Symptoms in Determining Whether a Medically Determinable Impairment is Severe."
Step 3. When an individual is found to have a severe impairment, the adjudicator must proceed with the sequential evaluation process and must next consider whether the individual's impairment is of the severity contemplated by the Listing of Impairments contained in appendix 1, subpart P of 20 CFR part 404. Inasmuch as CFS is not a listed impairment, an individual with CFS alone cannot be found to have an impairment that meets the requirements of a listed impairment; however, the specific findings in each case should be compared to any pertinent listing to determine whether medical equivalence may exist.[5]

Further, in cases in which individuals with CFS have psychological manifestations related to CFS, consideration should always be given to whether the individual's impairment meets or equals the severity of any impairment in the mental disorders listings in 20 CFR, part 404, subpart P, appendix 1, sections 12.00 ff. or 112.00 ff.

Steps 4 and 5. For those impairments that do not meet or equal the severity of a listing, an assessment of residual functional capacity (RFC) must be made, and adjudication must proceed to the fourth and, if necessary, the fifth step of the sequential evaluation process.[6] In assessing RFC, all of the individual's symptoms must be considered in deciding how such symptoms may affect functional capacities. See SSR 96-7p, "Titles II and XVI: Evaluation of Symptoms in Disability Claims: Assessing the Credibility of an Individual's Statements" and SSR 96-8p, "Titles II and XVI: Assessing Residual Functional Capacity in Initial Claims."
If it is determined that the individual's impairment(s) precludes the performance of past relevant work (or if there was no past relevant work), a finding must be made about the individual's ability to perform other work. The usual vocational considerations (see 20 CFR 404.1560-404.1569a and 416.960-416.969a) must be applied in determining the individual's ability to perform other work.

Many individuals with CFS are "younger individuals," ages 18 through 49 (see 20 CFR 404.1563 and 416.963). Age, education, and work experience are not usually considered to limit significantly the ability of individuals under age 50 to make an adjustment to other work, including unskilled sedentary work.[7] However, a finding of disabled is not precluded for those individuals under age 50 who do not meet all of the criteria of a specific rule and who do not have the ability to perform a full range of sedentary work. The conclusion about whether such individuals are disabled will depend primarily on the nature and extent of their functional limitations or restrictions. Thus, if it is found that an individual is able to do less than the full range of sedentary work, refer to SSR 96-9p, "Titles II and XVI: Determining Capability to Do Other Work -- Implications of a Residual Functional Capacity for Less Than a Full Range of Sedentary Work." As explained in that Ruling, whether the individual will be able to make an adjustment to other work requires adjudicative judgment regarding factors such as the type and extent of the individual's limitations or restrictions and the extent of the erosion of the occupational base for sedentary work.

Duration. The medical signs and symptoms of CFS fluctuate in frequency and severity and often continue over a period of many months or years. Thus, appropriate documentation should include a longitudinal clinical record of at least 12 months prior to the date of application, unless the alleged onset of CFS occurred less than 12 months in the past, or unless a fully favorable determination or decision can be made without additional documentation. The record should contain detailed medical observations, treatment, the individual's response to treatment, and a detailed description of how the impairment limits the individual's ability to function over time.

When the alleged onset of disability secondary to CFS occurred less than 12 months before adjudication, the adjudicator must evaluate the medical evidence and project the degree of impairment severity that is likely to exist at the end of 12 months.[8] Information about treatment and response to treatment as well as any medical source opinions about the individual's prognosis at the end of 12 months are helpful in deciding whether the medically determinable impairment(s) is expected to be of disabling severity for at least 12 consecutive months.

Continuing Disability Reviews. In those cases in which an individual is found to have a disability based on CFS but medical improvement is anticipated, an appropriate continuing disability review should be scheduled based on the probability of cessation under the Medical Improvement Review Standard. This standard takes into account relevant individual case facts such as the combined severity of other chronic or static impairments and the individual's vocational factors.

Documentation
General. As with all claims for disability under both title II and title XVI, documentation of medical signs or laboratory findings in cases involving CFS is critical to establishing the presence of a medically determinable impairment. In cases in which CFS is alleged, longitudinal clinical records reflecting ongoing medical evaluation and treatment from the individual's medical sources, especially treating sources, are extremely helpful in documenting the presence of any medical signs or laboratory findings, as well as the individual's functional status over time. Every reasonable effort should be made to secure all available, relevant evidence in cases involving CFS to ensure appropriate and thorough evaluation.
Generally, evidence for the 12-month period preceding the month of application should be requested unless there is reason to believe that development of an earlier period is necessary, or unless the alleged onset of disability is less than 12 months before the date of the application.

Recontacting Medical Sources/Consultative Examinations. If the adjudicator finds that the evidence is inadequate to determine whether the individual is disabled, he or she must first recontact the individual's treating or other medical source(s) to determine whether the additional information needed is readily available, in accordance with 20 CFR 404.1512 and 416.912.[9] Only after the adjudicator determines that the information needed is not readily available from the individual's health care provider(s), or that the necessary information or clarification cannot be sought from the individual's health care provider(s), should the adjudicator proceed to arrange for a consultative examination(s) in accordance with 20 CFR 404.1519a and 416.919a. The type of consultative examination(s) purchased will depend on the nature of the individual's symptoms and the extent of the evidence already in the case record.

Resolution of Conflicts. It should be noted that conflicting evidence in the medical record is not unusual in cases of CFS due to the complicated diagnostic process involved in these cases. Clarification of any such conflicts in the medical evidence should be sought first from the individual's treating or other medical sources.

Medical opinions from treating sources about the nature and severity of an individual's impairment(s) are entitled to deference and may be entitled to controlling weight. If we find that a treating source's medical opinion on the issue(s) of the nature and severity of an individual's impairment(s) is well-supported by medically acceptable clinical and laboratory diagnostic techniques and is not inconsistent with the other substantial evidence in the case record, the adjudicator will give it controlling weight. (See SSR 96-2p, "Titles II and XVI: Giving Controlling Weight to Treating Source Medical Opinions," and SSR 96-5p, "Titles II and XVI: Medical Source Opinions on Issues Reserved to the Commissioner.")[10]

Assessing Credibility. In accordance with SSR 96-7p, if the existence of a medically determinable impairment that could reasonably be expected to produce the symptoms has been established, as outlined above, but an individual's statements about the intensity, persistence, or functionally limiting effects of symptoms are not substantiated by objective medical evidence, the adjudicator must consider all of the evidence in the case record, including any statements by the individual and other persons concerning the individual's symptoms. The adjudicator must then make a finding on the credibility of the individual's statements about symptoms and their functional effects. When additional information is needed to assess the credibility of the individual's statements about symptoms and their effects, the adjudicator must make every reasonable effort to obtain available information that could shed light on the credibility of the individual's statements.

Treating and other medical sources. In evaluating credibility, the adjudicator should ask the treating or other medical source(s) to provide information about the extent and duration of an individual's impairment(s), including observations and opinions about how well the individual is able to function, the effects of any treatment, including side effects, and how long the impairment(s) is expected to limit the individual's ability to function. Opinions from an individual's medical sources, especially treating sources, concerning the effects of CFS on the individual's ability to function in a sustained manner in performing work activities or in performing activities of daily living are important in enabling adjudicators to draw conclusions about the severity of the impairment(s) and the individual's RFC. In this regard, any information a medical source is able to provide contrasting the individual's impairment(s) and functional capacities since the alleged onset of CFS with the individual's status prior to the onset of CFS will be helpful in evaluating the individual's impairment(s) and its functional consequences.

Third-party information, including evidence from medical sources who are not acceptable medical sources for the purpose of establishing the existence of a medically determinable impairment, but who have provided services to the individual, may be very useful in deciding the individual's credibility. Information other than an individual's allegations and reports from the individual's treating sources helps to assess an individual's ability to function on a day-to-day basis and to depict the individual's capacities over a period of time. Such evidence includes, but is not limited to:

Information from neighbors, friends, relatives, or clergy;
Statements from such individuals as past employers, rehabilitation counselors, or school teachers about the individual's impairment(s) and the effects of the impairment(s) on the individual's functioning in the work place, rehabilitation facility, or educational institution;
Statements from other practitioners with knowledge of the individual, e.g., nurse-practitioners, physicians' assistants, naturopaths, therapists, social workers, and chiropractors;
Statements from other sources with knowledge of the individual's ability to function in daily activities; and The individual's own record (such as a diary, journal, or notes) of his or her own impairment(s) and its impact on function over time.
The adjudicator should carefully consider this information when making findings about the credibility of the individual's allegations regarding functional limitations or restrictions.

EFFECTIVE DATE:
This Ruling is effective on the date of its publication in the Federal Register.

CROSS-REFERENCES:
SSR 96-2p, "Titles II and XVI: Giving Controlling Weight to Treating Source Medical Opinions," SSR 96-3p, "Titles II and XVI: Considering Allegations of Pain and Other Symptoms in Determining Whether a Medically Determinable Impairment is Severe," SSR 96-4p, "Titles II and XVI: Symptoms, Medically Determinable Physical and Mental Impairments, and Exertional and Nonexertional Limitations," SSR 96-5p, "Titles II and XVI: Medical Source Opinions on Issues Reserved to the Commissioner," SSR 96-7p, "Titles II and XVI: Evaluation of Symptoms in Disability Claims: Assessing the Credibility of an Individual's Statements," SSR 96-8p, "Titles II and XVI: Assessing Residual Functional Capacity in Initial Claims," and SSR 96-9p, "Titles II and XVI: Determining Capability to Do Other Work -- Implications of a Residual Functional Capacity for Less Than a Full Range of Sedentary Work."
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[1] Except for statutory blindness.

[2] For individuals under age 18 claiming benefits under title XVI, disability will be established if the individual is suffering from a medically determinable physical or mental impairment (or combination of impairments) that results in "marked and severe functional limitations." See section 1614(a)(3)(C) of the Act and 20 CFR 416.906. However, for clarity, the following discussions refer only to claims of individuals claiming disability benefits under title II and individuals age 18 or older claiming disability benefits under title XVI. The concepts in this ruling, however, are also intended to apply in determining disability based on CFS for individuals under age 18 under title XVI.

[3] There is considerable overlap of symptoms between CFS and Fibromyalgia Syndrome (FMS), but individuals with CFS who have tender points have a medically determinable impairment. Individuals with impairments that fulfill the American College of Rheumatology criteria for FMS (which includes a minimum number of tender points) may also fulfill the criteria for CFS. However, individuals with CFS who do not have the specified number of tender points to establish FMS, will still be found to have a medically determinable impairment.

[4] It should be noted that standard laboratory test results in the normal range are characteristic for many individuals with CFS, and should not be relied upon to the exclusion of all other clinical evidence in decisions regarding the presence and severity of a medically determinable impairment.

[5] In evaluating title XVI claims for disability benefits for individuals under age 18, consideration must also be given to the possibility of functional equivalence. See 20 CFR 416.926a.

[6] These steps of the sequential evaluation process are not applicable to claims for benefits under title XVI for individuals under age 18. See 20 CFR 416.924.

[7] However, "younger individuals" ages 45-49 who are illiterate in English or unable to communicate in English, whose past work was unskilled (or who had no past relevant work), or who have no transferable skills, and who are limited to a full range of sedentary work, must be found disabled under rule 201.17 in Table No. 1 of appendix 2 of the Medical-Vocational Guidelines in 20 CFR part 404

[8] To meet the statutory requirement for "disability," an individual must have been unable to engage in any SGA by reason of any medically determinable physical or mental impairment which is expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months. Thus, the existence of an impairment for 12 continuous months is not controlling; rather, it is the existence of a disabling impairment which has lasted or can be expected to last for at least 12 months that meets the duration requirement of the Act.

[9] We may not seek additional evidence or clarification from a medical source when we know from past experience that the source either cannot or will not provide the necessary findings.

[10] A medical source opinion that an individual is "disabled" or "unable to work," has an impairment(s) that meets or is equivalent in severity to the requirements of a listing, has a particular residual functional capacity (RFC), that concerns whether an individual's RFC prevents him or her from doing past relevant work, or that concerns the application of vocational factors, is an opinion on an issue reserved to the Commissioner. Every such opinion must still be considered in adjudicating a disability claim; however, the adjudicator will not give any special significance to such an opinion because of its source. See SSR 96-5p, "Titles II and XVI: Medical Source Opinions on Issues Reserved to the Commissioner."

Social Security Disability Office
www.SocialSecurity.gov Visit Official Social Security Website to Apply

SOCIAL SECURITY DISABILITY SECRETS: SSD SSI TIPS ADVICE TO WIN ...
The social security administration disability page ... Conditions for which the etiology is unclear such as fibromyalgia, chronic pain, chronic fatigue ...
www.disabilitysecrets.com/

 

[taniaaust1]

Examples of laboratory findings that establish the existence of a medically determinable impairment
At this time, there are no specific laboratory findings that are widely accepted as being associated with CFS. However, the absence of a definitive test does not preclude reliance upon certain laboratory findings to establish the existence of a medically determinable impairment in persons with CFS. Therefore, the following laboratory findings establish the existence of a medically determinable impairment in individuals with CFS:[4]

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.
Mental findings that establish the existence of a medically determinable impairment
Some individuals with CFS report ongoing problems with short-term memory, information processing, visual-spatial difficulties, comprehension, concentration, speech, word-finding, calculation, and other symptoms suggesting persistent neurocognitive impairment. When ongoing deficits in these areas have been documented by mental status examination or psychological testing, such findings constitute medical signs or (in the case of psychological testing) laboratory findings that establish the presence of a medically determinable impairment.

(the above quote was out of the Social Security stuff)

Sounds like you American guys and girls are going to be even more screwed with Social Security as the CDC has now made it hard to get tests.
................

One area which got me.. was that CDC is discouraging tilt table testing.... tilt table testing proves one has POTS... POTS should be ruled out in cases of CFS!!! (POTS can appear alone and cause many of the CFS definations symptoms). I wonder what the CDC would say if one asked them.. how can one tell CFS and POTS apart if there is no tilt table testing and seeing that one with only POTS could be mistakenly diagnosed with CFS under their poor CFS definations?

(yeah i know POTS can also be part of CFS.. but it truely should be completely ruled out as it can be the actual cause of a CFS diagnoses in some who ONLY have POTS). People need to know that may be the cause of all their symptoms or not as at least if one only has POTS, one may be able to get treatment and not be an invalid no more..
Those with CFS need to know too.. as how else would many doctors know we have POTS with the CFS which needs treatment if the main test for POTS is discouraged
(i think my post has been completely confusing but i dont know how to make what im trying to say clearer)

 

[taniaaust1]

They do still have info about myalgic encephalomyelitis that it is different from CFS: http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html So maybe they will say XMRV is linked with ME, not CFS? And a whole bunch of people have been misdiagnosed as having CFS when they actually have ME? That's pretty clever. And it kind of fits what patients have been saying for a while, that CFS is different from ME.

I say we lobby for a separate ME information page, using their own statement that ME is a different illness with neurological factors. And demand a study on ME, not CFS.Tina

I think this idea is a great one.. we need to stop their game play by demanding a separate page for ME as currently they are lumping ME with CFS when it suits them.. and then separating the two things when it doesnt suit them. This loop hole, gives them a lot of room to move about and will enable them to get out of any responsiblity for any harm they cause those with CFS.

By forcing them to make the difference obvious... a ME page, it will put a stop to some of their playing with peoples heads. It will also then help those with a CC CFS defination.. separate from the CDC CFS group.

Rightfully they SHOULD have a ME page... they say its a different illness but then give no idea on this difference illness.. and surely the centre of disease control SHOULD be covering ME. ME is certainly a disease.

CDC we want a page with ME defined.. What IS ME? How is ME different from CFS?
CDC we want to know how ME can be ruled out from a CFS diagnoses if tests arent done?

 

[George]

I call Major BS

And I have a really good poop detector (grins)

Theoretical and Experimental Tests

"A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study. In the latter case, written informed consent of the patient is required. No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time."

This list (thanks Frickly for pulling it out of that mess) is exactly the test that are used by Dr. Peterson, Dr. Klimas and any other clinicians that work with CFS patients.

If we could get some folks to dig up the list of test's (somewhere on this website) used by these doctors and compare it to this list I think it will look like a "hit" list.

I'm with Muffin that we need to do something about this. It's a problem cause it "invalidates" 30 years of papers on "PubMed" as well as the doctors who are currently treating us. So what say we start a letter campaign showing this list which just came out and the list of the top docs and as the media, state officials, federal officials and patient advocacy groups Why the CDC is aligning itself against the 30 years of research and the doctors who treat us???

If we can get Frickly or someone to write the letter up and we all take a chuck of e-mail addresses we can have the first wave out in a day or two.

What do you guys think?

 

[George]

They do still have info about myalgic encephalomyelitis that it is different from CFS: http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html So maybe they will say XMRV is linked with ME, not CFS? And a whole bunch of people have been misdiagnosed as having CFS when they actually have ME? That's pretty clever. And it kind of fits what patients have been saying for a while, that CFS is different from ME.

I say we lobby for a separate ME information page, using their own statement that ME is a different illness with neurological factors. And demand a study on ME, not CFS.Tina

Maybe that's what they are trying to do get us all rebranded as ME instead of CFS??? How the heck do 1 million people in the US get our doctors to rebrand us????

 

[leelaplay]

one big HUGE YES

 

[BRCforME.org]

The answer is our own PR machine. The CDC wins this fight because they can afford PR. Money should be going to biomedical research, yes, but it should also be going into real Public Relations. Newspaper an TV ads should have been running now concerning the link between XMRV and CFS.
This fight is on two fronts. The research front, which is now seeing progress, and the public relations front, which is still nowhere to be seen.