HOW TO HELP
Join the Global FND Movement
Patient rights do not change once they receive an FND diagnosis. FND patients have a right to full disclosure when it comes to diagnosis, treatment, and testing. They have a right to choose between conflicting medical opinions. FND patients have a right to not be physically or psychologically harmed during the process of diagnosis and treatment.
There are countless ways to get involved with our organization. We invite patients, family and friends to consider how you might show your support. Those diagnosed with Functional Neurological Disorder unite together to share the hope that they will again one day enjoy the opportunities they did before becoming symptomatic.
The denial of medical care to some is an abstract concept. To others, although it is an unfamiliar phrase, it is a reality they have had the unfortunate opportunity to experience either first hand or through a friend or loved one.
Those suffering from symptoms which are not only often extremely painful but can be debilitating as well, fight for better health.
In the mean time, they are not content to suffer in silence and accept poor treatment from those whom have confused medically unexplained with medically unexplainable. Those diagnosed with Functional Neurological Disorder unite together to share hope that they will again one day enjoy the opportunities they did before becoming symptomatic.
We Thank the many who provide support and those in the medical community who are providing respectful and ethical care to their patients diagnosed with Functional Neurological Disorder and any other derivatives.
Journalist Alan Shaw from the UK’s The Weekly News interviewed Jenn Birtwistle about her life with FND.
By: Sarah Holmes
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1a.Gelauff JM, Dreissen YE, Tijssen MA, Stone J. Treatment of Functional Motor Disorders. Current treatment options in neurology 2014b; 16: 1-15.
2a. Nielsen G, Stone J, Edwards MJ. Physiotherapy for functional (psychogenic) motor symptoms: A systematic review. Journal of psychosomatic research 2013; 75: 93-102.
3a. Czarnecki K, et al., Functional movement disorders: Successful treatment with a physical therapy rehabilitation protocol, Parkinsonism and Related Disorders (2011), doi:10.1016/j.parkreldis.2011.10.011
4a. Edwards MJ, Stone J, Nielsen G. J Neurol Neurosurg Psychiatry (2012). doi:10.1136/jnnp-2011-302147
1) Functional (psychogenic) Movement Disorders. Curr Opin Neurol. 2012 Aug;25(4):507-12. Czarnecki K, Hallett M. Source Human Motor Control Section, NINDS, NIH, Bethesda, Maryland 20892-1428, USA.
2) Functional (psychogenic) movement disorders: merging mind and brain. Lancet Neurol 2012; 11: 250–60 Sobell Department of Motor Neuroscience and Movement Disorders, UCL Institute of Neurology, London, UK (M J Edwards PhD, Prof K P Bhatia MD)
3) The functional neuroimaging correlates of psychogenic versus organic dystonia. Brain 2013 136: 770-781 Anette E. Schrag, Arpan R. Mehta, Kailash P. Bhatia, Richard J. Brown, Richard S. J., Rackowiak, Michael R. Trimble, Nicholas S. Ward, and James B. Row.
FND Hope, FND Hope UK, and FND Hope Canada (collectively “FND Hope”) are all committed to the health and well-being of those with functional symptoms and have joined forces with other bodies in a global network to advocate best practices for ethical patient centred care for Functional Neurological Disorder (“FND”).
As a public service, FND Hope has assembled a database (the “FND Hope Database”) comprising Neurologists and other health care professionals, such as Occupational Therapists, Physiotherapists, Psychiatrists, Psychologists and other appropriate disciplines, who have declared and confirmed their experience in treating FND (“Practitioners”). Professional qualifications and experience naturally vary between Practitioners and certain Practitioners have particular skills and have enjoyed success in treating certain aspects of conditions in patients with symptoms of a functional nature, suspected or diagnosed with FND.
Limitations, Warranties and Disclaimers
IN USING THE FND HOPE FUNCTIONAL NEUROLOGICAL DISORDER SEARCH DATABASE, YOU ARE DEEMED TO HAVE CONFIRMED THAT YOU HAVE READ AND UNDERSTOOD THE FOLLOWING WARRANTIES AND DISCLAIMERS, AND THAT YOU ACCEPT COMPLETELY THE LIMITATIONS AND OTHER STIPULATIONS.
Purpose of database: Providing access to the FND Hope Database, is solely to assist someone suffering with a functional disorder to locate one or more Practitioners who may be familiar, not only with the concepts of functional disorders, but also with the best practices in functional medicine and treatment and who may be willing to provide appropriate care.
Appropriateness: Functional medicine is a recognised approach to health care and not of itself a separate profession so Practitioners are drawn from many different disciplines. It is, therefor vital to recognise that in selecting a Practitioner from the database, it is never a substitute for a thorough investigation of a potential Practitioner’s professional qualifications and training, relevant clinical experience, scope of practice, participation (or not) in any reimbursement or insurance scheme, anticipated remuneration, malpractice insurance coverage, or other similar criteria.
Content, accuracy, and completeness: Many of the Practitioners listed in the FND Hope Database have been recommended to FND Hope by patients themselves on the basis of their own experience with the Practitioner and on the results achieved. The FND Hope Database itself has been populated principally by information received from individual Practitioners on whose professional integrity in providing such information FND Hope has relied implicitly. FND Hope does not itself investigate or verify the education, experience, or credentials, nor rate or rank Practitioners and therefore it expressly will not and cannot provide advice on the suitability, expertise, scope of practice, or availability of a particular clinician.
A Practitioner is solely responsible for providing and updating the information displayed in his or her profile on the FND Hope Database. Whilst FND Hope uses all reasonable efforts to ensure the integrity and accuracy of such information and does not knowingly permit inaccurate or misleading material to be displayed, it is not responsible for any inaccurate, out-of-date, or missing information relating to an individual practitioner’s profile nor for the absence of a Practitioner from the database and therefore does not warrant, directly or indirectly the veracity or entirety of such information.
Liability: Should you experience an unsatisfactory outcome of care with a Practitioner whom you may contact as a result of using the FND Hope Database, FND Hope hopes that you will bring such outcome to our attention. However, FND Hope will not be responsible for any such outcome and you will hold FND Hope harmless from all liability. In no event shall FND Hope be liable to you or to any third party for any direct, indirect, incidental, special, exemplary, or consequential damages however caused as a result of any factor, relationship, or failure thereof, between a patient and a Practitioner, however, such claim is based whether in contract, strict liability, tort (including negligence or otherwise), or any other theory and arising in any way from your use of and reliance on the FND Hope Database, even if the possibility of such damage may have been anticipated or may previously have been advised.
Continuity: FND Hope reserves the right at any time and without notice either to add Practitioners to the FND Hope Database or to remove a Practitioner for any reason and without explanation or liability.
Intellectual property: The FND Hope Database and all rights, title and interest therein is proprietary to FND Hope. No part of the FND Hope Database may be copied, downloaded, stored, reassembled, reconstructed to form an independent database or other information retrieval system, nor used in an accessible manner on a website, nor shared with any third party (other than someone for whom a user is responsible for their medical care) nor otherwise be used for any purpose whatsoever outside the purpose and scope as described. That is, use is limited strictly to the facility for allowing the identification and contact of a Practitioner.
Data protection: FND Hope respects your privacy and rights regarding any personal information that necessarily we may receive from you through your access and use of the Database. Access and use of the FND Hope Database is subject always to your acceptance without modification of all the terms and conditions of the FND Hope Terms of Service and Privacy Policy, as from time to time amended, which may be viewed in full at https://fndhope.org/about-fnd-hope/terms-of-service-and-privacy-policy/
In illness, in general, there are not many different treatment options. There are medical treatments (drugs), surgical treatments, physical treatments (physiotherapy, occupational therapy, rehabilitation) and cognitive/psychological treatments (e.g. cognitive behavioural therapy (CBT), psychotherapy). There are in addition complementary medical treatments such as acupuncture, therapeutic massage, hypnosis, homoeopathy.
Given the nature of FND, it should be obvious that medical and surgical treatments are unlikely to have much of a role in treatment for most people, as these treatments have largely been developed for problems resulting from structural or degenerative neurological disease. I most commonly use medication as treatment for other medical conditions which happen to affect a person with FND. For example, I see quite a lot of people with FND who have chronic migrainous symptoms, and so I use migraine preventative medications for these people to try to help these symptoms. I see some people with FND who have depression in addition or obsessive-compulsive disorder, and so I might use medical (or more commonly cognitive) treatments to help with this problem. I see this as in general “reducing the demand on the system”. In other words that if a person with FND also has chronic migraine then successful treatment of the migraine may well make the FND improve as the overall demand on the system has been reduced by treating the other medical problem.
Sometimes treatment occurs in the setting of “multidisciplinary rehabilitation” where people with FND are often admitted to hospital for a period of time (for example 4-6 weeks) to have regular CBT, specialist physiotherapy and occupational therapy. This sort of treatment is most useful for people who have severe and complex symptoms where, for example, they would be unable to attend outpatient treatment because of the level of their disability. There other similar programs for people who have dominant symptoms of pain or fatigue.
It is difficult to give advice about complementary treatments as response is often very different between different people and there is, in general, a lack of evidence for what helps. It is also important to note that people with chronic illness in general where treatment can be difficult, as is the case for many with FND, are vulnerable to claims from unscrupulous people who just want to make money by peddling miracle cures. However, I have had patients who have told me that they have got a lot of benefit from things like acupuncture, therapeutic massage and hypnosis. It is always a good idea to go on personal recommendation when seeing such practitioners.
1. Spiegel H, Spiegel D. Trance and treatment: clinical uses of hypnosis. 2nd ed. Washington, DC: American Psychiatric Pub; 2004.
2. Tellegen A, Atkinson G. Openness to absorbing and self-altering experiences (“absorption”), a trait related to hypnotic susceptibility. J Abnorm Psychol. 1974 Jun;83(3):268–277.
3. Spiegel D. Tranceformations: hypnosis in brain and body. Depress Anxiety. 2013 Apr;30(4):342–352.
4. Spiegel H, Greenleaf M, Spiegel D. Hypnosis. In: Sadock VA, editor. Kaplan Sadocks Compr Textb Psychiatry. 7th ed. Philadelphia: Lippincott Williams & Wilkins; 2000. p. 2128–2145.
5. Hoeft F, Gabrieli JDE, Whitfield-Gabrieli S, et al. Functional brain basis of hypnotizability. Arch Gen Psychiatry. 2012 Oct;69(10):1064–1072.
6. Craig ADB. Significance of the insula for the evolution of human awareness of feelings from the body. Ann N Y Acad Sci. 2011 Apr;1225:72–82.
7. Damasio AR. The somatic marker hypothesis and the possible functions of the prefrontal cortex. Philos Trans R Soc Lond B Biol Sci. 1996 Oct 29;351(1346):1413–1420.
8. Seeley WW, Menon V, Schatzberg AF, et al. Dissociable intrinsic connectivity networks for salience processing and executive control. J Neurosci Off J Soc Neurosci. 2007 Feb 28;27(9):2349–2356.
9. Aybek S, Nicholson TR, Zelaya F, et al. Neural correlates of recall of life events in conversion disorder. JAMA Psychiatry. 2014 Jan;71(1):52–60.
10. Baslet G. Psychogenic non-epileptic seizures: a model of their pathogenic mechanism. Seizure. 2011 Jan;20(1):1–13.
11. Voon V, Gallea C, Hattori N, Bruno M, Ekanayake V, Hallett M. The involuntary nature of conversion disorder. Neurology. 2010 Jan 19;74(3):223–228.
12. Voon V, Brezing C, Gallea C, et al. Emotional stimuli and motor conversion disorder. Brain J Neurol. 2010 May;133(Pt 5):1526–1536.
13. Moene FC, Kuyk J. Hypnosis in the treatment of psychogenic nonepileptic seizures. In: Schachter SC, LaFrance WC, Gates JR, editors. Gates Rowans Nonepileptic Seizures. 3rd ed. Cambridge ; New York: Cambridge University Press; 2010. p. 297–306.
14 Barry JJ. Hypnosis and psychogenic movement disorders. Psychogenic Mov Disord Neurol Neuropsychiatry. Lippincott Williams & Wilkins; 2006. p. 241–248.
15. Barry JJ. Nonepileptic seizures: an overview. CNS Spectr. 2001 Dec;6(12):956–962.
16. Schoenberger NE. Research on hypnosis as an adjunct to cognitive-behavioral psychotherapy. Int J Clin Exp Hypn. 2000 Apr;48(2):154–169.
17. Wade D. Rehabilitation for hysterical conversion states. A critical review and conceptual reconstruction. In: Halligan PW, Bass CM, Marshall JC, editors. Contemp Approaches Study Hysteria. Oxford ; New York: Oxford University Press; 2001.
1. Spiegel H, Spiegel D. Trance and treatment: clinical uses of hypnosis. 2nd ed. Washington, DC: American Psychiatric Pub; 2004.
2. Tellegen A, Atkinson G. Openness to absorbing and self-altering experiences (“absorption”), a trait related to hypnotic susceptibility. J Abnorm Psychol. 1974 Jun;83(3):268–277.
3. Spiegel D. Tranceformations: hypnosis in brain and body. Depress Anxiety. 2013 Apr;30(4):342–352.
4. Spiegel H, Greenleaf M, Spiegel D. Hypnosis. In: Sadock VA, editor. Kaplan Sadocks Compr Textb Psychiatry. 7th ed. Philadelphia: Lippincott Williams & Wilkins; 2000. p. 2128–2145.
5. Hoeft F, Gabrieli JDE, Whitfield-Gabrieli S, et al. Functional brain basis of hypnotizability. Arch Gen Psychiatry. 2012 Oct;69(10):1064–1072.
6. Craig ADB. Significance of the insula for the evolution of human awareness of feelings from the body. Ann N Y Acad Sci. 2011 Apr;1225:72–82.
7. Damasio AR. The somatic marker hypothesis and the possible functions of the prefrontal cortex. Philos Trans R Soc Lond B Biol Sci. 1996 Oct 29;351(1346):1413–1420.
8. Seeley WW, Menon V, Schatzberg AF, et al. Dissociable intrinsic connectivity networks for salience processing and executive control. J Neurosci Off J Soc Neurosci. 2007 Feb 28;27(9):2349–2356.
9. Aybek S, Nicholson TR, Zelaya F, et al. Neural correlates of recall of life events in conversion disorder. JAMA Psychiatry. 2014 Jan;71(1):52–60.
10. Baslet G. Psychogenic non-epileptic seizures: a model of their pathogenic mechanism. Seizure. 2011 Jan;20(1):1–13.
11. Voon V, Gallea C, Hattori N, Bruno M, Ekanayake V, Hallett M. The involuntary nature of conversion disorder. Neurology. 2010 Jan 19;74(3):223–228.
12. Voon V, Brezing C, Gallea C, et al. Emotional stimuli and motor conversion disorder. Brain J Neurol. 2010 May;133(Pt 5):1526–1536.
13. Moene FC, Kuyk J. Hypnosis in the treatment of psychogenic nonepileptic seizures. In: Schachter SC, LaFrance WC, Gates JR, editors. Gates Rowans Nonepileptic Seizures. 3rd ed. Cambridge ; New York: Cambridge University Press; 2010. p. 297–306.
14 Barry JJ. Hypnosis and psychogenic movement disorders. Psychogenic Mov Disord Neurol Neuropsychiatry. Lippincott Williams & Wilkins; 2006. p. 241–248.
15. Barry JJ. Nonepileptic seizures: an overview. CNS Spectr. 2001 Dec;6(12):956–962.
16. Schoenberger NE. Research on hypnosis as an adjunct to cognitive-behavioral psychotherapy. Int J Clin Exp Hypn. 2000 Apr;48(2):154–169.
17. Wade D. Rehabilitation for hysterical conversion states. A critical review and conceptual reconstruction. In: Halligan PW, Bass CM, Marshall JC, editors. Contemp Approaches Study Hysteria. Oxford ; New York: Oxford University Press; 2001.
1. Reuber M et al. 2007 “Tailored psychotherapy for patients with non-epileptic seizures and other functional neurological symptoms: a pilot study” Journal of Psychosomatic Research 63:625-632.
2. Mayor R, et al. 2010 “Long-term outcome of psychotherapy for psychogenic non-epileptic seizures: seizure control and healthcare utilisation. Epilepsia 51(7),1169-76
3. Hubschmid M et al. 2015 “Efficacy of brief interdisciplinary psychotherapeutic intervention for motor conversion disorder and nonepileptic attacks” General Hospital Psychiatry 37(5):448-55.
1.Hofmann SG et al. 2013 “The science of cognitive therapy” Behavioural Therapy 44(2):199-212.
2.Goldstein LH et al. “Cognitive-behavioral therapy for psychogenic nonepileptic seizures: a pilot RCT” Neurology 2010;74(24):1986-94.
3.LaFrance WC Jr and the NES Treatment Trial (NEST-T) Consortium 2014 “Multicenter pilot treatment trial for psychogenic nonepileptic seizures: a randomized clinical trial” JAMA Psychiatry 71(9):997-1005.
1. Aybek et al. 2015 “Emotion-motion interactions in conversion disorder: an fMRI study” PLoS One 10(4):e0123273
2. Voon et al. 2011 “Aberrant supplementary motor complex and limbic activity during motor preparation in motor conversion disorder” Movement Disorders 26(13):2396-403.
3. Voon et al. 2010 “Emotional stimuli and motor conversion disorder” Brain 2010;133(5):1526-36.
4. Aybek et al. 2015 “Neural correlates of recall of life events in conversion disorder JAMA Psychiatry 71(1):52-60.
Edwards MJ. Pract Neurol 2016;16:2–3. doi:10.1136/practneurol-2015-001310
Stone J. Pract Neurol 2016;16:7–17. doi:10.1136/practneurol-2015-001241
Stone J, Carson A. Continuum (Minneap Minn) 2015;21(3):818–837
Maurer CW, LaFaver K, Ameli R, et al. Impaired self-agency in functional movement disorders: A resting-state fMRI study. Neurology 2016; Epub 2016 Jul 6.
¹GUIDED SELF-HELP FOR FUNCTIONAL (PSYCHOGENIC) SYMPTOMS, A randomized controlled efficacy trialM. SHARPE, MD, J. WALKER, MBCHB, C. WILLIAMS, MD, J. STONE, PHD, J. CAVANAGH, MD, G. MURRAY, PHD, I. BUTCHER, PHD, R. DUNCAN, MD, PHD, S. SMITH, PHD AND A. CARSON, MD, HTTP://WWW.NEUROLOGY.ORG/CONTENT/EARLY/2011/07/27/WNL.0B013E318228C0C7.ABSTRACT#