Expert Interview: Dr. Avram Gold on UARS, Chronic Fatigue & Functional Somatic Syndromes

In this month’s Expert Interview, I interview Dr. Avram Gold, a pioneer in researching the link between upper airway resistance syndrome, chronic fatigue, and the functional somatic syndromes. Some of the topics will include:

  • What are the functional somatic syndromes and how are they related to sleep-breathing disorders?
  • What’s the relationship between central sensitivity syndrome and stress?
  • How is sleep-disordered breathing related to stress?
  • How is anxiety or depression related to functional somatic syndromes?
  • How is chronic fatigue syndrome connected to the this condition?  

Please click here to access the download.

Please note: I reserve the right to delete comments that are offensive or off-topic.

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14 thoughts on “Expert Interview: Dr. Avram Gold on UARS, Chronic Fatigue & Functional Somatic Syndromes

  1. I’m not sure how this session will be helpful to patients who have CFS based on the strictest diagnostic criteria.

    I’m sure Dr. Gold is aware that there is no objective scientific evidence that CFS is a Functional Somatic Syndrome – just a hypothesis by psychiatrists who study tired people rather than CFS patients. (FSS is not even listed in the DSM – it is a made up term). Situational anxiety and depression are common comorbidities in dozens of organic diseases – CFS is no different than those.

    I’m sure Dr. Park and Dr. Gold understand that a differential diagnosis depends on both duration and severity – duration alone is not enough. The failure to account for severity (post exertional malaise last more than 24-hours unrelieved by rest and upon minimal exertion) has severely skewed the scientific literature.

    Studying peaches and calling them apples just because they are both round means that studies on peaches cannot be extrapolated to apples.

    Despite the name, Chronic Fatigue Syndrome – also known as myalgic encephalomyelitis and post viral fatigue syndrome – is so much more than being tired. It is a severe complex neuroimmune disease. Below is the clinical definition used to diagnose ME/CFS.

    It should not to be confused with the solitary symptom of chronic fatigue which is just one of many symptoms found in over 30 diseases including ME/CFS. You need to be careful that you are not diagnosed with CFS when it could be something far less serious or something serious that can be cured or treated.

    Once thought to be psychological modern scientists consider the cause to be viral although the resulting cascade in multiple body systems may result in other concerns at the tertiary level. There is currently no cure.

    The 2003 Canadian Clinical Case Definition is summarized as follows and symptoms from all of the categories are required for a clinical diagnosis of CFS.

    The full paper can be found in PubMed.

    1. POST-EXERTIONAL MALAISE AND FATIGUE: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

    2. SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.

    3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature. Often, there are significant headaches of new type, pattern, or severity. Neuropathic pain is also a common symptom

    4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following difficulties should be present: Confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: Informational, cognitive, and sensory overload — e.g., photophobia and hypersensitivity to noise — and/or emotional overload which may lead to relapses and/or anxiety.

    5. AT LEAST ONE SYMPTOM OUT OF TWO OF THE FOLLOWING CATEGORIES:

    A. AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: E.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities.

    B. NEUROENDOCRINE MANIFESTATIONS: Loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.

    C. IMMUNE MANIFESTATIONS: Tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.

    6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.

    Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. J CFS 2002;11(1):7 – 116

  2. Maybe the ‘pioneer’ you’re interviewing can produce research that presents symptoms such as the autonomic dysfunction in number 5, section A as a ‘functional somatic syndrome.’

    I’ve seen a lot of ‘researchers’ such as Christine Heim suggest that CFS is a ‘functional somatic sydnrome.’ Lots of research connecting CFS to early childhood trauma, sexual abuse, and personality disorders.

    Anything suggesting a link between those sorts of issues and NMH/POTS, orthostatic intolerance, low blood volume…still haven’t seen that. Still waiting.

    Still waiting for Dr. JT to explain how his protocol is supposed to improve people whose symptoms are explained by the Canadian Consensus Criteria. The very people, if you actually know anything about this, who have the disease that the term ‘chronic fatigue syndrome’ was coined to represent in the first place. Of course, from Holmes to Fukuda to Empirical, the CCC became necessary as the criteria changed so dramatically as to exclude the people it was originally supposed to describe.

    It seems to be a rather inconvenient document. If you hold the view that ‘chronic fatigue syndrome’ is a ‘functional somatic syndrome,’ or anything like it, that is.

    Of course, the CDC now says that these symptoms may be exclusionary for a CFS diagnosis.

    Hmmm.

    That’s a pickle.

    So for those of us defined by the Canadian Consensus Criteria, since you have the counsel of an expert, does that mean we no longer have CFS?

    Maybe in that case it’s a ‘functional somatic syndrome.’ It can be anything you want it to be, anything the CDC decides to call it this year.

    But that’s what I was diagnosed with; Myalgic Encephalomyelitis is not recognized by the CDC. But you knew that, right? Of course you did.

    But we’ve had this diagnosis for a long time. So what do you suppose we have?

    Googling “Avram Gold” and “Myalgic Encephalomyelitis” produces exactly 9 results, 7 of which relate to this interview you’re doing about legitimately serious issues like anxiety and depression.

    That’s an expert in chronic fatigue syndrome?

    It’s not like there isn’t someone at Stony Brook who actually knows something about this. You know–the guy at IACFS/ME.

    Weak.

  3. I have to agree with KAL. You may have fallen for the scam perpetrated by CDC, NIH and the small cadre of UK insurance lobbyists trained as psychiatrists and posing as scientists that denominate ME (“CFS”) as a ‘functional somatic syndrome.” It is a neuro-immune disease similar to, but more disabling than MS.

  4. To the last three commenters:

    Notice that I didn’t say chronic fatigue syndrome. I said chronic fatigue, which is a common symptom that is an expected consequence of not getting proper deep sleep. Stress (by not breathing properly, or through intense emotional or physical trauma) can wreak havoc on the brain, leading to major biochemical, neurologic, immmunologic and physical changes. Please listen to the interview to hear what Dr. Gold has to say. This was not meant to be the solution for CFS or fibromyalgia or ME. He and I have both noticed that most people with these conditions have narrowed upper airway anatomy and treating it can help some patients in significant ways. It doesn’t discount or refute any of the other often conflicting opinions on these issues. You’ll have to admit that being able to sleep well and wake up refreshed is a goal that everyone with these issues would wish for.

  5. This is your first paragraph at the top of this page:

    “Please join me on Tuesday, March 22nd at 8 PM Eastern when I’ll interview Dr. Avran Gold, a pioneer in researching the link between upper airway resistance syndrome, chronic fatigue syndrome, and the functional somatic syndromes.”

    Yes, you said chronic fatigue syndrome, just as you misspelled Dr. Gold’s first name. Take a look.

    I don’t know if I should be surprised that someone who thinks Dr. Teitelbaum is a credible voice on CFS doesn’t know of the people who have spent much of their career declaring Chronic Fatigue Syndrome to be a functional somatic syndrome. What they have done to people, especially in the UK. Probably not.

    The term ‘crimes against humanity’ is not, I assure you, hyperbolic. Not one iota.

    Perhaps if you had presented this as a sleep disorder-oriented presentation instead of conflating Chronic Fatigue Syndrome with Functional Somatic Syndromes (which are, yes, commonly known to be somatization/somatoform disorders), then you wouldn’t have gotten the negative comments you did.

    Nobody really wants to have to spend energy trying to correct people who should know better. And after all this time, it’s kind of hard to be nice about it.

    If you want to speak to an expert on Chronic Fatigue Syndrome, you have two of the most well-known and respected clinicians when it comes to Myalgic Encephalomyelitis right across the park from you. Literally a stone’s throw.

    I’d start with the guy on Fifth Avenue. Shouldn’t be too hard for you to figure out who that is. The lady on 72nd St. is a member of the CFSAC.

    If you actually care about Chronic Fatigue Syndrome, you’ll find out more about it from either of them than you ever will from Jacob Teitelbaum.

  6. Three Cord Monte,

    My apologies. I though I had edited that out. I made it a point to try to avoid using chronic fatigue syndrome, in trying to focus on the sleep problems that these people have rather than claiming to be able to treat the condition completely. My main point in this teleseminar was that sleep-breathing problems are a major component in many people with CFS, Fibromyalgia or ME, and that if treated more appropriately, whatever treatment options you choose can work a lot better. I got similar arguments from the ADHD community when I suggested that a significant number of children with ADHD had a treatable sleep-breathing problem.

    What’s the name of the woman that you’re referring to?

  7. Okay, my apologies as well if I was rude in the comments thread on the WSJ piece. No harm, no foul. I will ask that you understand that Dr. Teitelbaum is someone that some of us do not particularly care for, and we have our reasons. His endless plugging of his protocol does not apply to the disease described in this document.

    http://www.cfids-cab.org/MESA/ccpc.html

    My strongest recommendation is, for one interested in this disease, to contact Dr. Enlander. His website is here

    http://www.enlander.com/main.html

    and an interview he gave a few months ago is viewable here, beginning with part 1 at this link.

    http://www.youtube.com/watch?v=8jEIWiWABRQ&feature=related

    Dr. Susan Levine is also quite knowledgeable about ME/CFS, and her office is located on 72nd St., to the best of my knowledge, or at least it was the last I heard. Both have been in the same neighborhood for a long time. Dr. Levine is a member of the Chronic Fatigue Syndrome Advisory Committee at the Department of Health & Human Services, which meets formally twice a year. These meetings are webcast live while in progress; I believe the next meeting occurs in about six weeks or so.

    Dr. Benjamin Natelson is also headquartered locally, and he has co-authored some very important research, not the least of which was the recent paper that was covered on the CBS Evening News by Katie Couric. Here is a link to another example of mainstream coverage.

    http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2011/02/24/spinal-fluid-may-hold-clues-to-lyme-disease-chronic-fatigue-syndrome

    We as a patient community have not been used to this sort of coverage, at least not until the XMRV paper published by the Whittemore-Peterson Institute appeared in Science magazine some 18 months ago.

    So when we hear the conflation of ‘functional somatic syndromes’ with ‘chronic fatigue syndrome’–and I did listen to the entire presentation, and Dr. Gold, whose email address ends in .gov, also used these terms, in context–it is not exactly pleasant.

    Fred Freidberg, who is based out of Stony Brook, would have been able to provide some context. But it’s over; time to move on.

    We are doing what we can to see to it that this much-misunderstood disease may come to be seen for what it is by those who need to know. Chronic Fatigue is a symptom, but we are damaged every time it is used. The CDC has turned a very serious disease into a symptom of many others.

    This is unacceptable.

  8. Thank you Dr. Park for the fascinating and provocative interview with Dr. Gold. I learned so much and am very grateful.

  9. Dr. Pak, Your clarification was helpful. I’m glad that you understand and appreciate the difference between ME/CFIDS and chronic fatigue.

    Very interesting that you have noticed restriction in upper airways of pwME and FM. We much need good science on ME. Since you say that this can be remedied with good results, I’d encourage you to study and publish on this. Hopefully using funding grants for ‘upper airway disorders’ if there is such a thing, since it’s almost impossible to get funding for bona fide studies on ME, thanks to NIH’s war on ME science and patients.

  10. I’d like to see a copy of the handout referred to at the very end of the interview. Thanks for bringing this information to us!