Primer for family, friends and care providers

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Primer for family, friends and care providers is for those who know or care for someone with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complicated and life-altering systemic, biological, neuro-immune disease.[1] Patient care and severity of the disease is poorly understood due to decades of research neglect and a lack of clinical care worldwide.[2][3]

Chronic Fatigue Syndrome (CFS) is not Chronic Fatigue. It is not a psychiatric illness or "illness beliefs" which is the widely accepted hypothesis in the UK.[4][5] This has led to the use of Graded Exercise Therapy (GET), which can severely injure persons with ME/CFS; and Cognitive Behavioural Therapy (CBT) that cannot treat a physiological disease. Exercise and exertion make patients worse triggering a myriad of chronic and disabling symptoms.[6][7][8] The hallmark symptom is Post-exertional malaise (PEM).

ME/CFS affects up to 2.5 million Americans with estimates of 17 million worldwide.[9][10] "A quarter of all patients are entirely house-, bed- or wheelchair-bound. One in ten dies prematurely due to major organ failure, cancer, heart disease or suicide."[11] In 2012, the Centers for Disease Control & Prevention (CDC) estimated less than 20% of Americans that have CFS were diagnosed.[12] Diagnosis can take years with a patient seeing several doctors before receiving a diagnosis. A 2008 ProHealth survey of 1,210 ME/CFS patients showed "29% had been ill from 6 to 20-plus years before being diagnosed."[13]

Diagnosing ME/CFS is difficult as there is no biomarker and there are numerous definitions and criteria that have been developed and utilized over the decades. See: Definitions of ME and CFS.

MEAction provides the guide Caring for People with Myalgic Encephalomyelitis.

Disease onset and course of illness

The disease ME/CFS is diagnosed when a person does not recover from a flu-like illness, EBV, Mononucleosis, HHV, Q fever, Virus or other infections and meets one or more diagnostic criteria for either ME, CFS or ME/CFS.[14][15][16] "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."[17] Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity among patients.[18][19][20]

Pediatric ME/CFS

Children are also afflicted with ME/CFS.[21][22] See: Pediatric.

Prognosis

Prognosis for ME/CFS is generally poor. See: Prognosis

Female to male ratio

Like many auto-immune and neuro-immune diseases where mostly women are afflicted,[23] the ME/CFS female/male patient ratio is 6:1.[24] Fibromyalgia has a F/M 7:1 ratio[25] and some ME/CFS patients have this additional diagnosis.[26][27]

Drugs, treatments

Drugs

Two treatments that have garnered much attention are Ampligen, produced by Hemispherx Biopharma, and Rituximab. Many people have reported enormous benefit from Ampligen, some doctors have been prescribing it for ME/CFS for decades. Attempts to obtain FDA approval for Ampligen in the US have failed so, despite its usefulness, it is unavailable to many. Argentina has approved the use of Ampligen in 2016. Also in 2016, it was made available on a limited basis in Europe. July of 2018, Hemispherx Biopharma, Inc "announced the immediate expansion of its Treatment Protocol/Expanded Access Programs for ME/CFS in the United States, known as AMP-511, to new enrollees for the first time in more than a year."[28]

Rituximab, a lymphoma drug, had shown promising results in initial trials in Norway, and there were groups crowdsourced funding for further trials in other countries. On Nov 21, 2017, Drs. Øystein Fluge and Olav Mella announced that their Rituximab trial had failed. They stated that they would focus their efforts on attempting to identify a subgroup of ME/CFS patients with an immune profile that would be responsive to Rituximab. The Drs. will publish a paper next year with the specifics of the failed trial.[29]

Jarred Younger announced in March 2016 that he will be undertaking a trial of Low dose naltrexone (LDN) in ME/CFS.[30]


Controversy

Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, GET and CBT are employed by ME Clinics. Exercise exacerbates symptoms and can further injure patients.[31][32] Depression and anxiety drugs are utilized usually with poor and even damaging results.[33]

Treating a biological disease as a mental illness is cost effective. The drugs are inexpensive and biomedical research is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance having clauses excluding a mental health illness/disease kick in stopping any payment or shortening the payout timeframe.[34][35][36][37]

Charlatans claim they can cure CFS ("There is no cure"[38]) when in reality they may be able to treat chronic fatigue (CF). Some people misdiagnosed and "recovered" from CFS most likely had CF or a bad year or two with Mononucleosis along with a bout or two of Influenza. These individuals were experiencing a proper immune response whereas ME/CFS is an ongoing improper immune response.

Working with government to move forward

Advocates met with senate staffers the week of March 16, 2016, and discussed research and drug development by the NIH, the CDC reinstating and increasing funding and education based on IOM recommendations and the HHS funding to develop Centers of Excellence.[39] MEAction reports on this ongoing process.

Recommended viewing

Documentary

  • Unrest is a US documentary film that will air on PBS's Independent Lens in 2018. Jennifer Brea, a person with ME, directs. (2017)

Mini-doc & Short film

Shorts

News media

Talks and interviews

Recommended reading

Government health organizations

USA
Centers for Disease Control (CDC)
National Institutes of Health (NIH)
Institute of Medicine (IOM)

ME/CFS research foundations

UK
Invest in ME
USA
Open Medicine Foundation (OMF)

ME/CFS organizations

Australia
Emerge Australia
UK
ME Association
Tymes Trust (Pediatric)
USA
Massachusetts CFIDS/ME & FM Association
Solve ME/CFS
International
MEAction

Other organizations

National Organization for Rare Disorders (NORD)

Other reading

Research avenues

Notable studies

Learn more

See also

References

  1. What is ME/CFS? - Open Medicine Foundation
  2. Reexamining Chronic Fatigue Syndrome Research And Treatment Policy - Health Affairs Blog By: David Tuller
  3. Funding for ME Research Centers Announced Falls Way Short -#MEAction
  4. Submission re: DSM-V and ME/CFS 25% ME Group
  5. Getting it Wrong on Chronic Fatigue Syndrome - New York Times By: Julie Rehmeyer and David Tuller
  6. Moving Toward Answers in ME/CFS - NIH Director's Blog By Dr. Walter Koroshetz and Dr. Francis Collins
  7. What is ME/CFS? - Open Medicine Foundation
  8. Get the Facts about ME/CFS
  9. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts - Feb 2015
  10. How many people have ME/CFS - ME Research UK
  11. FDA's Voice of the Patient Report on Chronic Fatigue Syndrome Reveals Disease Impact and Areas for Progress - ME/CFS Australia (SA) Inc - By: Pandora.org
  12. Chronic Fatigue Syndrome - Diagnostic Challenges - CDC - 2012
  13. A Profile of ME/CFS Patients - How Many Years and How Many Doctors?
  14. IOM Report - INFECTION
  15. The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014
  16. Definitions of ME and CFS - MEpedia
  17. Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc
  18. Symptoms and diagnosis of ME/CFS - ME Association
  19. Chronic Fatigue Syndrome - Symptoms - Web MD
  20. Facts (ME/CFS) Severity
  21. ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
  22. Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
  23. Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
  24. Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
  25. Fibromyalgia:Epidemiology - Medscape
  26. Fibromyalgia - CDC
  27. What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative
  28. Hemispherx BioPharma : Opens FDA-Approved Reimbursement Based Expanded Access Treatment Program for ME/CFS to New Enrollees - 4 Traders
  29. http://simmaronresearch.com/2017/11/norwegian-rituximab-chronic-fatigue-syndrome-mecfs-trial-fails/
  30. http://www.psy.uab.edu/younger/research.html
  31. Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS - Slightly Alive - By: Mary Schweitzer
  32. GET and CBT are dangerous treatments for ME patients - Petition - 38 Degrees - By Michael Evison
  33. CFS or depression - what are the differences - Dr. Myhill.co.uk
  34. Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? - By: David Tuller Virology Blog
  35. Physical Illnesses May Soon Be Labeled “Mental Disorders” - Psychology Today - Toni Bernhard, J.D.
  36. People with mental illness face widespread discrimination - The Guardian - David Batty
  37. Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits - Thoughts About ME
  38. Management of CFS - CDC
  39. #MEAction meets with Senate staffers


The information provided at this site is not intended to diagnose or treat any illness.

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history