A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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The Names of Research Centres

Discussion in 'General ME/CFS News' started by Persimmon, Dec 19, 2011.

  1. Persimmon

    Persimmon Senior Member

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    Has it struck anyone else that the recently formed ME/CFS research institutes have been set up to do ME/CFS research (primarily) and yet avoid making this explicit in their names?
    This isn't the norm for centres devoted to arthritis or cancer or diabetes or AIDS etc. I mean, a new cancer research institute isn't likely to call itself the Irregular Growth Initiative.

    We have the following:
    Stanford Chronic Fatigue Initiative
    Chronic Fatigue Initiatiive (CFI)
    Bond University's Population Health and Neuroimmunology Unit (PHANU)
    Whittemore Peterson Institute for Neuro-Immune Disease
    Institute for Neuro-Immune Medicine at Nova Southeastern University

    (The Mount Sinai ME/CFS Center is an exception.)

    No question, they're all trying to do good work, which we sincerely appreciate. And yes, I'm sure these institutes would love to crack FM, GWS etc, as well as ME/CFS, so there's a plausible explanation for the N-I naming... and the Population Health bit relates to another organisation in partnership with Bond Uni, but...

    Given the persisting prejudices against ME/CFS, might it be that it's easier to apply for grant money and seem respectable if your letterhead says that you're studying "neuro-immune disease", or even "chronic fatigue", rather than "ME/CFS" or "CFS" or "Chronic Fatigue Syndrome"? ("Chronic fatigue" mightn't be a disease, but nobody thinks you're loopy if you merely say that you're chronically tired, and so in this sense, perhaps it makes for a comparatively unobjectionable name.)

    [Maybe this issue was covered when the CFI was announced??]
     
  2. Desdinova

    Desdinova Senior Member

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    I have no problem with the Research Centers being cautious with the name they use. Because as much as I may not fully like it I know and fully understand that such a name is a move based on public relations and politics. It's the research, studies etc. that these research centers preform that is important. As long as they are honest and open about what and who they are studying and stay true to their missions goal I really see no problem.
     
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  3. taniaaust1

    taniaaust1

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    It wouldnt make sense for these centres to call their centres ME/CFS ones in their actual names when they are also working on other illnesses too and not just solely the ME/CFS.

    The Stanford one... maybe that is just a "fatigue" clinic rather then something which has its main focus on ME.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think they are going that way as it is too confusing explaining me and cfs. I think neuroimmune really nails what systems are involved in this or these illnessses, so maybe they think they could be dealing with more then one illness. Also in the International Consensus criteria the term neuroimmune is used. The terms ME and cfs have been dirtied too much by psychobabblers.

    cheers!!!
     
  5. denlander

    denlander

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    Good point Cort. We are not afraid of calling a spade a spade.

    we are interestesd in ME/CFS so I called the center The Mount Sinai ME/CFS Center for treatment and research.
    But on the other hand with the exceprion of Nancy's clinic in Florida, the other centers have a short experience in the disease
    Meanwhile Eric Schadt, who will spearhead our genetics thrust, is in talks with his friend Ian Lipkin. Ian and Eric have been friends for years. Ian is now interested in New York based stuff, and we have tha largest cohort of patients in the East Coast.

    Derek Enlander MD
    Mount Sinai ME/CFS Center
    New York


     
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  6. CBS

    CBS Senior Member

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    The Stanford Clinic is definitely not "just a 'fatigue' clinic" It's full name as listed in a newsletter I received in April, 2011 is the STANFORD INITIATIVE FOR THE STUDY OF INFECTION-ASSOCIATED CHRONIC DISEASES.

    I know that the Stanford Web-page is entitled "Stanford Chronic Fatigue Initiative" but it is my impression that Dr. Montoya ,while heavily focused on ME/CFS with a clear infectious component, is also looking at Lyme and MS. With regard to the Stanford Clinic I don't think that characterizing it as "short on experience with the disease" is accurate. It is focused on what is likely a sub-set of patients with clear infectious components to their CFS (Dr. Montoya does not often use the term ME). FWIW, Dr. Montoya is an internationally respected infectious disease specialist (Director of the National Toxoplasmosis Reference Laboratory at Stanford).

    Another clinic that could be added to your list is Dr. Bateman's Fatigue Consultation Clinic. In this case, the description as a "Fatigue Clinic" has been used for nearly a decade and Dr. Bateman sees a wide range of patients including Fibromyalgia patients, chronically fatigued patients (little "c" and little "f") and ME/CFS patients. Again, I wouldn't describer her as being "short on experience with the disease" at all. In a manner that contrasts with Stanford, she probably sees as broad a selection of CFS and Fibro patients as anyone. I don't see this as a problem in any way. She clearly distinguishes between the various groups she sees (her words are "little 'c' little 'f'" when describing her chronically fatigued patients). I suspect that the diversity of patients in her clinic is due to a combination of factors including patient need in the larger geographic region as well as economics of a relatively small and independent practice.

    I for one have no problem with doctors seeing a very narrow or broad range of patients (which may play a role in the chosen name). What matters to me is that they clearly define/characterize their cohorts (patients) when studying (treating) ME, that they do not co-mingle subjects in their ME/CFS studies and that they clearly describe their cohorts when they publish a study.
     
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  7. Persimmon

    Persimmon Senior Member

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    Hi Dr Enlander,

    Many thanks for the feedback.

    It was fantastic to be able to watch videos of yourself and Dr Schadt presenting at your recent conference, and it's hugely encouraging to have someone of Dr Schadt's calibre on board - even more encouraging when informed of his relationship with Dr Lipkin.

    I've no idea how you attracted Dr Schadt, but doing so was a spectacular achievement.
    For that matter, it was also an impressive feat to establish your Center at Mount Sinai. Of the premier hospitals/university-hospitals in America, only two seem to have publicly committed themselves to addressing ME/CFS - Stanford and Mount Sinai. Kudos to you, and to Dr Montoya, and also to your backer and to Tina Caskey & her family (Dr Montoya's backers).

    I like it when people call a spade a spade, but recognise that sometimes well-intentioned people feel reticent to do so. This thread wasn't intended as criticism of any of the named institutes. It just struck me that even among organisations specifically created to help us, there might be a sense that the prejudice against ME/CFS is sufficiently pervasive and malevolent that they dare not be explicit/open about their purpose. Dr Montoya recently made some disconcerting disclosures about the anti-ME/CFS prejudice that he continues to experience within the academic medical community - see post #16 of the Voices From The Shadows thread (http://forums.phoenixrising.me/showthread.php?15201-Voices-From-the-Shadows/page2).

    BTW, I'm not Cort!
     
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  8. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    CBS, I didn't know that Bateman also sees idiopathically fatigued patients. That makes me understand that better, although I still would prefer a different name for her clinic. On the other hand I really don't like the names of Klimas' fatigue clinic and the CFI and Stanford CFI. I assume that Klimas, being a more nationally recognised authority can and does tailor her practice more strictly to ME, so why the "F word"? Also, when questioned on this the 2 CFIs gave ludicrous answers. The Stanford CFI said they needed a four word name for the domain name and CFI said:

    Seriously? Am I missing something?

    As far as 'neuro-immune', that's fine with me. I would guess that it's used in part to study other diseases like Lyme and in part because "CFS" doesn't sound that impressive/ has a stigma.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I suppose these organisations dont want to turn people away that cant find help. I assume there are many people out there with severe fatigue but dont fit the diagnosis of me/cfs. I dont think we should turn our back on people with other fatigue illnesses which is what we/us with true cfs/me(whatever that is) have been fighting for, that just leaves them out in the open with no help and in a worse predicament then cfs/me. We can seperate these disorders for studies etc but we shouldnt ignore them as we all know what thats like.

    cheers!!!
     
  10. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Heapsreal, I'm ok with a clinic calling itself a fatigue clinic if they do in fact treat patients with idiopathic cf as well as ME. Not certain if Montoya or Klimas also treat ICF. I would expect that they would say this is the reason when they have been challenged on this and they have not said that. CFI claims that it studies ME ("CFS") and only ME, not any other fatiguing illness or ICF, so it really makes no sense (plus they have been challenged directly on this and their only response was the nonsensical one above).
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Montoya and Klimas are probably 2 of the very few who could really diagnose cfs/me???
     
  12. Valentijn

    Valentijn Activity Level: 3

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    I go to a Fatigue Center (vermoeidheidcentrum). They specialize in treating ME/CFS, but also diagnose and treat other forms of fatigue. I'm probably getting some additional treatment that people without ME/CFS wouldn't need, such as ergotherapy, but there is considerable overlap in treatments: B12, relaxation therapy, sleep studies, sleep meds, etc.

    Even the people with "normal" persistent fatigue need help, and the broadened scope of their practice doesn't seem to negatively impact the quality of care I'm getting for ME. I don't have to explain feeling light-headed (the direct translation is not a commonly understood concept in Dutch and the closest options are dizzy, giddy, or delirious), and even the relaxation therapist understood ME well enough to caution me to wait before standing after I sat up.

    I suppose the ultimate concern for me is the quality of treatment I'm getting, not what the clinic or research center calls itself. After all, there's probably plenty of British institutions using CFS and/or ME in the title which are only offering exercise-torture and brain-washing :p
     
  13. CBS

    CBS Senior Member

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    Hi Justin,

    I agree with you that the phrase "chronic fatigue" in any context is not useful. This is not about being tired. As for Stanford IT requiring a four word title, I have no doubt that that is something they would impose (Stanford does not require but strongly suggests in its design guidelines that all Stanford web-pages use one of two fonts (Sabon and News Gothic - neither widely available) in order to brand the site - Stanford University is very protective of its image).

    Without implying that they don't take this disease seriously (Dr. Montoya has made some very strong statements in public about the seriousness of this disease and the failings of the broader medical community and he has stood firmly with us on this), I do however wish that they had chosen a different four words. Very few academics really get how much this grates on the patients. To them it's an obstacle and it is frustrating. To us it is very personal, its our lives.

    I could be wrong but I do not think that Dr. Montoya treats any ICF patients. Again, I too wish the CFI had chosen a different name.
     
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Another view

    On the other hand, fatigue is a real symptom that denotes illness. It could be psychological or physiological. Either way, doctors do consider fatigue to be a medical symptom of disease.

    It is symptom of cancer, AIDS, infections, autoimmune disease, hypothyroidism and more. Fatigue is a symptom of so many different diseases that it is one of the most common complaints made to doctors. And that, in of itself, is one of the problems with using the word to refer to ME/CFS. And, it could be confusing. MS has fatigue. Should an MS patient go to a chronic fatigue clinic?

    The problem with the word is that it is used in popular culture in a way that minimizes it. But in a medical setting, it is considered sign of disease, even if it doesn't tell you a lot about which disease. But, in popular culture, it is used to refer to too much of something so that all that is needed is a break. "TV fatigue", etc. But that is not the way doctors look at it.

    I hear that some doctors are trying to legitimize the word fatigue as medical by having clinics with "chronic fatigue" as part of the name.

    I don't think there is a good solution. However, when I plummetted, the main debilitating symptom I had was fatigue. In my search for a knowledgeable doctor, I went through gynecologist, internist, endocrinologist and rheumatologists. They all either said I had a "different kind of depression" or had CFS or fibromyalgia, but they don't diagnose or treat it. Before deciding what to do next, I asked myself, what is my main symptom? The answer was fatigue. So, I ended up at the Fibro and Fatigue Clinic three hours away. Why? Because I figured they are experts on what I had, as my main symptom was in the name of their center.

    Tina
     
  15. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Tina, I understand what you're saying. In fact, in a similarly ironic way, the name "CFS" in a sense helped speed my diagnosis (and in other ways slowed it down). I wasn't getting a diagnosis other than hypochondriasis etc. from my doctor and pain and fatigue were my worst symptoms and I had heard of CFS, so I went to the library and looked at the "CFS" books and I was like "that is what i have." I had by then gotten a better doctor who hadn't diagnosed me with anything and i asked him if i had "CFS" and he said yes.

    I understand that some doctors see fatigue as a medical symptom. However, they are also mislead by "CFS" as Jason's study showed where doctors spent more time with patients and thought their illness was more serious if they came with the label "ME" than if they were labeled "CFS." So, I don't buy that as an excuse.
     
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Good point Justin.

    And do you have reference to the Jason study, as the one I am familiar with compared the label "chronic fatigue syndrome" to "neuroendocrineimmune disorder." Maybe the one I am thinking of did both. But I do remember that chronic fatigue syndrome did not get the serious response from medical professionals that the other term (whichever one it was) did.

    I think that is because fatigue is a symptom, not a disease. Whereas something that describes a system dysfunction, is a known, as opposed to a symptom of unknown. It is symptom of something, but doesn't tell you what. And, as said, in medical practice, CFS is, by definition, fatigue of unknown cause. Whereas the other terms describe a physical dysfunction.

    It's not that fatigue is not medical or possibly serious, it's that fatigue without a known cause doesn't tell them what to think, so they think it must be a problem with the person, instead of the body.

    With research recently, we now know what is going wrong in the body. We don't know the first cause, but we see the physicological affects, which explain the symptoms. It is time for the term "CFS" to go. It will not happen over night. But we must work toward that goal.

    Interesting dialogue.

    Tina
     
  17. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Tina, the names compared were CFS, myalgic encephalopathy, or Florence Nightingale disease. I thought it was doctors that were studied, but in this study it was college students and 'medical trainees.' I don't know what that means. http://hpq.sagepub.com/content/6/1/61.abstract Not sure if there was another study.
     
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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  19. Tristen

    Tristen Senior Member

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    Based on my own experience for almost 20 years with this progressive disease, I don't get why this issue of fatigue comes up at all. Fatigue has never been one of my symptoms. When I say that I don't have fatigue, I'm not talking severity, I'm talking quality. Fatigue is what I used to experience when I would work too many hours, or take a day hike after not eating all day. There are diseases that also have fatigue, especially like Adrenal Insufficiency, Addisons, and Cancer, etc. I don't experience that kind of real fatigue.

    Even during my worst bed bound severe illness periods, I was not fatigued. I was so sick that it amazes me to this day to have survived it, but none of the symptoms were fatigue. Even in my worst PEM flares, I do not have symptoms resembling fatigue. I surely must look fatigued to others, but it's not what I feel. Fatigue is subjective, but I know what it feels like, and this isn't it. And therein lies the very reason I couldn't conclude a diagnosis of me/cfs, until the CCC came out. Yes it lists fatigue too, but all the rest of the symptoms fit me perfectly.

    I'm just saying this whole issue of where the symptom of fatigue belongs in our experience and diagnostic criteria....my vote is in the trash, and not just because it belittles the seriousness of our disease, but because it's entirely incorrect. I think we only keep it around for continuity with past criteria.

    Ok, done with my off topic tangent.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Agree, we dont feel tired , we feel sick. And the feeling is literally in our head, head aches/pressure fog etc etc like some type of meningittis/brain inflammation.

    cheers!!!
     

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