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Standing Up for Patients: An Interview with Dr. Derek Enlander

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 3, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    Gabby Klein considers the efforts Dr. Enlander has gone to to ensure that the reality of ME/CFS is presented to the world at large, and gives us an insight into his opinions on some current issues, including an update on the formation of an academy for ME and CFS physicians, announced recently at the Institute of Medicine meeting during his presentation...

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    Dr Derek Enlander

    I am honored to be presenting an interview with my own ME/CFS clinician, Dr. Derek Enlander. He diagnosed my disease 10 years ago when all other doctors were either stumped or unbelieving of my severe symptoms.

    He is a brilliant clinician, evidenced by the fact that he started medical school at the age of only 17! His devotion and commitment to finding ways to best treat his patients are appreciated by the many thousands located in New York as well as those coming to him from all over the world.

    Background:

    Dr. Enlander serves on the faculty of the Icahn School of Medicine at Mount Sinai in New York as well as attending physician at Mt. Sinai Medical School. He was physician-in-waiting to the Royal Family during their visits to New York. He has a private practice in New York City, specializing in the treatment of ME, CFS and fibromyalgia. In addition, he runs an active research program including treatment trials of Ampligen.

    In 2011, a generous grant of $1 million from an appreciative patient enabled Dr. Enlander to form the Mt. Sinai ME/CFS Center. He recruited the world renowned geneticist Dr. Eric Shadt as well as pulmonary specialist Dr. Christian Becker to work on a multidisciplinary study. The center is currently studying post-exertional malaise (PEM) and immune system dysfunction. They are looking at digestive markers and doing a full genome study on patients and healthy controls.

    Additional background information and an interview by Joel was conducted in April 2013, and can be read here.

    Dr. Enlander speaks up

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    Dr. Enlander is of Irish descent and has worked extensively with conferences and patients in Ireland and the U.K. in order to help the many patients there who are lacking treatment. His deep understanding and compassion for the seriousness of this disease has caused him to repeatedly speak up in behalf of the patients’ benefit. Here are some examples:

    In July 2007, Dr. Enlander wrote a letter to the editor of the Belfast Telegraph regarding the research on ME being performed in the City Hospital, Belfast. He pointed out that the focus of the research was on psychiatric parameters.

    “The thought is that if we change the patient mental outlook and induce Gated Exercise Therapy (GET), we will cure the disease. It is distressing, to me and to my patients, those doctors are still following this destructive approach of labeling patients as psychiatric. ..Let me be emphatic, this is a physical disease. ”

    On April 2008, Dr. Enlander wrote a letter to the Queen of England. He was asking the Queen to remove patronage from The Royal Society of Medicine which had formed an alliance with the insurance company, Unum.

    Unum had been known to refuse compensation for ME/CFS patient's medical expenses, by claiming their condition was psychiatric and should be treated as such. The Royal Society of Medicine had invited members of Unum to speak at a Chronic Fatigue Syndrome conference in which they and others would promote the psychiatric viewpoint of ME/CFS to the exclusion of physical medical research and treatment.

    On March 6, 2012, Dr. Enlander accepted an invitation by the Countess of Mar to appear as a keynote speaker at a meeting on ME/CFS in the House of Lords. He went on to describe ME as a physical complex disease and outlined the state of science accomplished so far in the field.

    In March of last year, in a letter to the editor of the Journal of Clinical Rheumatology, Dr. Enlander tackled the published paper. “Fear of movement and avoidance behaviour toward physical activity in chronic-fatigue syndrome and fibromyalgia: state of the art and implications for clinical practice”. He stated,

    “Myalgic encephalomyelitis/chronic fatigue syndrome (M.E./CFS) and fibromyalgia patients suffer from relapse when... subjected to over exercise. ...The notion that ME/CFS is caused by poor conditioning is no longer widely accepted.”

    The Institute of Medicine

    One other such occasion was at the Institute of Medicine (IOM) open meeting on January 27, 2014. The IOM has been contracted and tasked by HHS to re-define ME/CFS. This action by HHS has resulted in vigorous opposition from ME/CFS stakeholders. They oppose the idea that this complex disease can be defined by a panel consisting of many members who have no experience with the disease.

    Dr. Enlander was one of 50 experts who signed an open letter to Secretary Sebelius urging her to cancel the contract. One of Dr. Enlander’s patients, Jay Spero, with the help of fellow patients, traveled to Washington, D.C., in order to personally deliver the following message from Dr. Enlander to the IOM:

    “I was honored and pleased to have been asked to sign what has become known as the 'Experts' Letter,' where several dozen colleagues have expressed opposition to possibly altering or redefining the criteria of M.E. & C.F.S. by virtue of the pending IOM contract. If it was the case that there was opposition to the existing Canadian Consensus Criteria, then open discussion about these criteria would be more useful than closed door redefinition by a panel where the majority are not known to be familiar with the disease, Myalgic Encephalomyelitis.

    “At present, the Canadian Consensus Criteria are used by a majority of experts who diagnose and treat this disease; they adhere to the concepts defined by Dr. Melvin Ramsay, who helped pioneer research in this disease, in contemporary clinical settings. Were discussion and debate even necessary, one million dollars could still have been saved--a not insignificant percentage of NIH research funding dollars in this area. Given the paucity of funds allowed for research and study of what we know as Chronic Fatigue Syndrome, it seems, with all due respect, to be a shameful waste of money.

    “Open discussion on the IOM method of approach has not been made available; we can only hold out hope that the result is closer to one of the more strictly defined criteria. However, given all we have seen recently, marvelously chronicled by several patient-bloggers (notably, Jeannette Burmeister, Jen Spotila, and Erica Verrillo), it seems inevitable that any preference given to the 'Evidence Base,' may produce a set of loose criteria. In this area, where the 'evidence' has long been grossly distorted, and to date has produced a flawed, inaccurate model of this very serious physical disease, such criteria may well describe other conditions or disease models that are, simply put, not the disease described by Ramsay.

    “A group of us are forming the 'Academy of M.E. & C.F.S. Physicians,' composed of experienced clinicians and researchers familiar with the disease, M.E., and related conditions. The Academy will be an Independent resource for government, corporate and private groups to derive information relating to the latest research, diagnostic methods and treatment approaches. Training of young physicians in this area will be of prime importance.

    “Dictatorial direction will continue to do a grave disservice to a long-suffering patient community. My patients deserve better, as does anyone suffering from this horrible disease, and I must register my protest at this sadly unnecessary contract.”

    My Interview with Dr. Enlander:
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    I, like many others, was very impressed by Dr. Enlander’s message at the IOM meeting, and he graciously accepted my request for an interview with me.

    You recently delivered a comment to the IOM committee through Jay Spero. What prompted you to write those words for the panel and the audience to hear?

    “I thought it was important for physicians who are familiar with this disease to comment on the group which the Institute Of Medicine selected. Only a small proportion of this group seems to be familiar with the disease.”

    You were one of the 50 experts who signed the open letter to Secretary Sebelius urging her to cancel the contract with the IOM and to adopt the CCC (Canadian Consensus Criteria) now. Why did this group feel the need to take such a strong stand against an HHS action?

    “This group of experts considered it important to make a comment regarding whether we need to restate the criteria of ME or CFS. In hindsight, the letter seems if anything even more prescient, given makeup of the IOM group they have tasked to define the disease.”

    Why did your group specifically ask for the CCC to be adopted as opposed to the ICC (International Consensus Criteria)?

    “The CCC is the recognized criteria used by most of the experts to diagnose and treat the disease. There are some who favor the newer ICC, but my feeling is that while those may be more specific, actually they are more in need of refinement than the Canadian Consensus. But there is no need, definitely no need, for a million dollars to be spent on whatever refinement is necessary.”

    Do you believe that ME as defined by the CCC and CFS as defined by the Fukuda are one and the same? Is one the subset of the other? Does CFS exist?

    “There is a lot of debate into this question, and it’s both complicated and difficult to answer. In the right hands, Fukuda can properly diagnose ME. However, the right hands are few and far between, and at this point in time it seems more likely that a physician lacking experience with the disease can apply the Fukuda criteria inappropriately, resulting in a CFS diagnosis in a case where the patient is not suffering from Ramsay ME or CCC ME/CFS.”

    “There are some who consider ME to be a subset of CFS, but as ME predates CFS, and arguably is the reason CFS was initially created... I try to leave this to others. There is no reason to not diagnose and treat patients with CFS but not ME, but it is helpful and important to understand the difference. I have always been interested in focusing on ME rather than semantics, even as the nomenclature has changed over time.”

    Some patient groups believe that this study by the IOM to produce diagnostic clinical criteria for ME/CFS is in fact a positive development and a cause for celebration. They feel that this will result in an easier way for clinicians to diagnose the disease and therefore the patient will be better served. How would you respond to them?

    “Open discussion into the debate about new criteria would be a better solution. I have heard that line of reasoning, but in this area I can’t agree with it. Something that should also be mentioned is that, unfortunately, political and funding aspirations have a way of seeping into these things. Needless to say, this should not be a factor.”

    You have mentioned Dr. Ramsey’s work in your comment to the IoM. Do you have personal connection with Dr. Ramsay and his work?

    “Ramsay was the most prominent, perhaps the father figure, in the original definition of ME. I have always considered him to be extremely important in our understanding of the history of the disease. Unfortunately, Dr. Ramsay died about 25 years ago, just prior to my interest in the disease, so I never had the opportunity to meet him.”

    Some have questioned the evidence-based method as tasked by HHS for this study as inappropriate for defining ME. Can you expound on that?

    “As I’ve previously said, open debate among those with actual experience in the care of ME and CFS patients would be the appropriate method to form a new definition, or edit and/or discard existing definitions.”

    You revealed the forming of a new group: the “Academy of M.E. & C.F.S. Physicians,” composed of experienced clinicians and researchers familiar with the disease, ME, and related conditions. Can you inform us on the details of the group and explain its function? Who has joined this group so far and why has it been formed?

    “The Academy at present is in the infant stage of being formed. There will be a particular focus on diagnosing and treating clinicians, including researcher physicians. We are in the process of electing members, this has just begun. It seems that such a group has been conspicuously absent for too long. Unfortunately, it is too soon to present a roster. However, we will do so as soon as possible.”

    How is your research study at Mt. Sinai Medical Center in New York progressing? Do you have any news that you can share with our viewers?

    “The pilot phase of the multisystem research on the effects of exercise on ME/CFS patients is complete. It’s difficult to estimate when we will see the results published, but we hope to do so very soon. Hopefully this can go a long way towards confirming or denying the conclusions of the PACE Trial with regards to Graded Exercise Therapy.”

    You have previously mentioned having a fellowship scheme for post-doctoral physicians at Mt. Sinai MEC. Has this started taking shape?

    “It is coming along, yes. At present new physicians are being trained in diagnosis and treatment of, and research into, the disease. Currently this includes a physician from India, as well as four medical students from Indonesia, studying and working with our group.”

    Do you agree with HHS that there is a need for separate criteria for research and clinical purposes? Please explain.

    “I am not sure what this means. I hope the separate criteria will not cause confusion or conflict. Any new definition should not be done in secret.”

    How do you currently diagnose your patients? Which criteria do you use?

    “There is something of a mandate for many years to use the Fukuda criteria, but in my mind a Ramsay-defined ME patient qualifies for the diagnosis using the Canadian Consensus Criteria.”

    What is your view on the issue of properly naming this disease?

    “I’m not really interested in the semantics - I am much more interested in proper diagnosis and effective treatments. There is lively debate, and aspects of this are important, but at times it tends to overshadow issues that I consider more important. For all intents and purposes we could call this Ramsay’s Disease.”

    “We have other entities such as Cushing's disease, Addison's, Grave's disease, etc., named after founding figures. With this instance we would perhaps discard the term CFS that has produced immense discontent, and reduce the semantics surrounding inflammation, neurological signs and symptoms... Including the fruitless debate we have previously seen about “Myalgic Encephalomyelitis” vs. “Myalgic Encephalopathy”. Details are important, but the debates become unhelpful.”

    Do you feel that we currently have testable biomarkers for the disease?

    “Yes, although not as many as we should have considering how much time has passed without proper recognition. I believe that the strongest candidates thus far proposed are the immune system markers including, NK cells, cytokine abnormalities, and T-cell abnormalities. We are also exploring newer factors related to post-exertional malaise.”

    “We are actively proposing a new research project pointed towards testable biomarkers and new treatment methods using Ampligen, Vistide and GcMaf. Government funding in this area is notoriously sparse. More government funding has been provided for itch research centers at Temple Medical School and elsewhere than for research in ME/CFS.”

    “We need to raise funds, and we need the help of patients and other interested people.”

    If you wish to donate to Dr. Enlander's ongoing and future research. Please contact: cfsconference@gmail.com

    Thank you, Dr. Enlander, for this interview and for everything you are doing for the ME/CFS community.


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  2. Roy S

    Roy S former DC ME/CFS lobbyist

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    Thanks, Gabby.
    I really appreciate our outstanding physicians and researchers advocating for the patient community. Delays in publishing research still suck, though.
     
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  3. Marco

    Marco Old blackguard

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    Just as a point of accuracy, Dr Enlander was born in Belfast Northern Ireland of Polish parents and was part of a small but influential and highly respected Jewish community largely living in the North of the city (a community that also produced the ex Israeli president Chaim Herzog) - a matter of great pride to us North Belfast folks.

    That's all - carry on : )
     
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  4. Nielk

    Nielk

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    Thanks Marco. I knew about the Jewish community of Belfast but not about Chaim Herzog.
     
  5. Marco

    Marco Old blackguard

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    Thanks Nielk

    I don't know why I mentioned it apart from maybe feeling a little nostalgic or homesick today?
     
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  6. snowathlete

    snowathlete

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    Thanks Gabby for this interesting interview. Dr Enlander is a real gem.
     
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  7. denlander

    denlander

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    Thank you Gabby and Marco. You are both correct.
    I am indeed an orthodox Jew, and Irish Jew, a British Jew (being born in Belfast allows me Irish and British heritage). I am fiercely Irish but attended a protestant high school in Belfast, and a Hebrew school daily in the late afternoon so I can understand the claims of most sides in Belfast.
    My family on my Mother v's side (the Kaitcer family) came from Russia in 1850. They set up an antique business on the quays near the Ha'penny Bridge in Dublin. My Mother v's and Zaida (my grandfather ) were born in Dublin near the South Circular Road, in the vicinity of George Bernard Shaw' s house. They lived in the Leopold Bloom's neighbourhood in Dublin as described in Joyce's Ulysses.
    My Father v's , Benny Enlander's family came from Lublin in Poland to Belfast at the turn of the 1900's. He founded a chain of stores Bennets Stores in Belfast, Bangor, Enniskillin, Omagh , Strabane and Derry. Woolworths bought many of the stores when he died.
    Both families were orthodox Jews
     
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  8. Thomas

    Thomas

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    that is wonderful to know. thank you for that info. My grandparents were holocaust survivors from Poland.
     
  9. Sasha

    Sasha Fine, thank you

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    We're very lucky to have you on our side, Dr Enlander!

    Great article, Gabby. :thumbsup:
     
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  10. Nielk

    Nielk

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    My parents were holocaust survivors from Hungary.
     
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  11. beaker

    beaker CFS/ME 1986

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    Thanks for the article Gabby ! Well done.

    Thank you @denlander for all your help. It is appreciated more than I can possibly express.
     
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  12. Ember

    Ember Senior Member

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    Thank you, Dr. Enlander!




    "So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as...Derek Enlander of New York City, feel they have to raise funds privately to continue their work." -- Llewellyn King

    See: ME Chronic Fatigue Association: Raising funds for research...
     
    Last edited: Mar 4, 2014
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  13. Nielk

    Nielk

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  14. Firestormm

    Firestormm Guest

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    @denlander

    Thank you for providing this interview.

    Can I ask when Mt. Sinai hope to be in a position to carry out a clinical trial on GcMAf which is I think something your refer to on your Facebook page as a project you would like to conduct - and also if you will try to ensure this is a randomised controlled trial and one that might also use a placebo for one treatment arm?

    I think solid clinical trials of proposed treatments are a definite priority for our community especially - and if you were to declare a specific fundraising venture in this respect I am sure you would receive support for it as you would volunteers for the trial.

    Are you also able to update us on the Ampligen trial? I must confess I know little about it other than that you are conducting one. Is this also a randomised trial and can you briefly provide some details?

    Many thanks.
     
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  15. searcher

    searcher

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    That was a great article Gabby. And thanks so much Dr Enlander for all you have done for patients.

    I didn't know about the history of Jews in Ireland so this has piqued my interest.

    As a side note, my grandparents were Holocaust survivors from Poland. I have met a surprising number of ME patients whose parents or grandparents were survivors.
     
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  16. medfeb

    medfeb Senior Member

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    Great article, Gabby and Dr. Enlander. Thank you!
     
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  17. Sing

    Sing Senior Member

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    I really appreciate your interview, Gabby, and hearing directly from Dr. Enlander too. A question I have is about one of the genetic diseases of Ashkanazi Jews, that of Familial Dysautonomia. I realize FD is very severe and shows up in infancy; however, I wonder if some of the research and treatment of it could be particularly helpful to ME patients who also have dysautonomia? Are there specialists at Mt. Sinai who research and treat autonomic diseases and symptoms, who could be helpful to us, as well as in the research you may be planning?

    Thank you!

    Sing
     
  18. denlander

    denlander

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    Thank you for your enquiry, and my apologies for not replying sooner.

    Our ME CFS Clinic in New York is one of the five sites in the nation using Ampligen. As you know, the FDA has not as yet given approval of the drug. The results of the current tests are being compiled by Hemispherx, the drug manufacturer, and will be published by them.

    GcMAF was initially the researched by Prof. Yamamoto two decades ago, the use of GcMAF in ME CFS is still under investigation is used on a patient by patient basis.
     
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  19. denlander

    denlander

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    I am pleased to report that Mount Sinai Medical Center has specialists that may be helpful to you.
     
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  20. Nielk

    Nielk

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    From Dr. Enlander's Facebook page:

     
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