Why Partnering with Fibromyalgia Exclusively in NIH Funding is a Problem

Problem

 

 

Warning: Cognitive Impairment Mistakes- If that bothers you, do not read!  

 

1. Many patients diagnosed “Fibromyalgia” really have M.E.and or M.E/CFS. Many doctors who do not know these illnesses will not give a “ME/CFS” diagnosis, but will give a Fibromyalgia diagnosis as stated by an anonymous G.P. in Florida because “they are afraid they will be criticized because drugs are approved for Fibromyalgia and not CFS.”

 

2. Many patients diagnosed Fibromyalgia or ME/CFS here  in the US have undiagnosed Lyme disease, thus are treated incorrectly with antidressants, Lyrica, etc., and the infectious disease aspect, Lyme disease, chronic activated viruses, immune deficiencies are overlooked, and not addressed, patient becomes more debilitated such as Severe ME patients who are diagnosed incorrectly with Fibromyalgia which is considered a “Functional Somatic Syndrome.”

 

3.  An IOM panel member says that there is no evidence of the “M” in M.E.which is incorrect.  Dr Ramsay said the “muscle phenomena” is fatigueability, which is the delay in recovery time, which is different from fatigue.

 

4. The head of the IOM panel stated they did not see evidence of Brain inflammation in the literature, thus then they are saying there is no neurological evidence for Cognitive impairment and other neurological related symptoms including seizures, paralysis, and all symptoms ME patients suffer.

 

5. If “Fibromyalgia” gets funding and not “ME/CFS,” grant applications for ME and CFS related studies will not be approved, thus, infectious disease, immune deficiency, and neurological components of the disease will be overlooked, disregarded, doctors misinformed, patients continue to be denied treatment unless they pay out of pocket. Medications such as immune modulators- Ampligen, Kutapressin/Nexavir, Immune globulin, Antivirals will not get approved with a “ME’ or “CFS” diagnosis which will be a problem for patients who have an M.E, ME/CFS, CFS diagnosis.

 

6. If the infectious disease component is not addressed, the Blood Bank issue will still be a huge problem as Blood banks do not test for Lyme spirochetes, Active EBV (Not cost efficient as per Red Cross),HHV6, CMV only on request for neonate and pediatric patients,  SIV, HERV, MLV, etc.        

 

References:

 

1. “There is only one functional somatic syndrome” 

Simon Wessely, Peter White 2004

http://bjp.rcpsych.org/content/185/2/95

 

2. “Cognitive-Affective Neuroscience of Somatization Disorder and Functional Somatic Syndromes: Reconceptualizing The Triad of Depression-Anxiety-Somatic Symptoms”  

Dan J. Stein, MD, PhD, and Jacqueline Muller, MD

http://www.cnsspectrums.com/aspx/articledetail.aspx?articleid=1538

 

3.  Fibromyalgia “pressure points” test is a hoax. Dont fall for it! Kathleen Dickson: Former Analytical Chemist for Pfizer turned “Lyme Cryme Whistleblower” http://www.actionlyme.org/081030.htm

 

4. “Developments in the Scientific and Clinical Understanding of Fibromyalgia  Dan Buskila Disclosures”Arthritis Res Ther. 2009;11(5):242 http://www.medscape.com/viewarticle/717473_4

 

5. “Defining Fibromyalgia or Myalgic Encephalopathy”

http://www.disabled-world.com/health/fibromyalgia/

 

6. “Is it Fibromyalgia or Chronic Fatigue Syndrome?”

Adrienne Dellwo- Fibromyalgia & Chronic Fatigue Expert

 http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/fms_or_cfs.htm

 

7. “Chronic Fatigue Syndrome and Fibromyalgia”

John Klippel, MD, Rheumatologist discusses the difference between fibro and CFS.

 http://www.arthritistoday.org/tools-and-resources/expert-q-and-a/fibromyalgia-questions/chronic-fatigue-syndrome-fibromyalgia.php

 

8. “The Surprising Link Between Fibromyalgia and Lyme Disease”

http://www.envita.com/lyme-disease/the-surprising-link-between-fibromyalgia-and-lyme-disease#sthash.x5Dm6Jsl.dpuf

 

9. “Fibromyalgia Mistaken for Lyme Disease” Learn why fibromyalgia may be misdiagnosed as Lyme disease.  

Doyt Conn, MD, Rheumatologist

http://www.arthritistoday.org/tools-and-resources/expert-q-and-a/fibromyalgia-questions/fibromyalgia-lyme-disease.php

 

10. “Are Your Fibromyalgia Symptoms Due to Lyme Disease?” Tick-borne disorders often mimic chronic pain syndromes

Post published by Richard Horowitz MD

https://www.psychologytoday.com/blog/why-can-t-i-get-better/201312/are-your-fibromyalgia-symptoms-due-lyme-disease

 

11. Immunological abnormalities in the chronic fatigue syndrome.  

Lloyd AR1, Wakefield D, Boughton CR, Dwyer JM. Med J Aust. 1989 Aug 7;151(3):122-4.

http://www.ncbi.nlm.nih.gov/pubmed/2787888

 

12. “Evidence for the Presence of Immune Dysfunction in Chronic Fatigue Syndrome”

Benjamin H. Natelson, Mohammad H. Haghighi, and Nicholas M. Ponzio 2002 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC120010/

 

13. THE CLINICAL IDENTITY OF THE MYALGIC ENCEPHALOMYELITIS SYNDROME

A.Melvin Ramsay M.A. M.D.

http://web.onetel.com/~kickback/THE%20CLINICAL%20IDENTITY%20OF%20ME.html

 

14. Caring for the M.E. Patient

Jodi Bassett

https://books.google.com/books?id=vRxcAwAAQBAJ&pg=PA18&lpg=PA18&dq=Melvin+Ramsay+Myalgic+Encephalomyelitis+Rest&source=bl&ots=FXxK2343kv&sig=EsHgLaw3fnQ8V_VQARaTygssufc&hl=en&sa=X&ei=ngwFVY-GOtDLsASFg4GgAg&ved=0CEMQ6AEwBg#v=onepage&q=Melvin%20Ramsay%20Myalgic%20Encephalomyelitis%20Rest&f=false

 

15. MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath.

A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. [Published 1986]

http://meactionuk.org.uk/ramsey.html

 

16. Den endemiska formen av ME/The endemic form of ME Postviral Fatigue Syndrome -The saga of Royal Free disease,

A. Melvin Ramsay, 1986, Gower Medical Publishing, London.

http://me-foreningen.se/filer/Ramsay-endemisk-ME.pdf

 

17. ‘Epidemic neuromyasthenia’ 1955-1978

A. MELVIN RAMSAY M.A., M.D. Infectious Diseases Department, Royal Free Hospital, London http://pmj.bmj.com/content/54/637/718.full.pdf

 

18. Activation of human herpesviruses 6 and 7 in patients with chronic fatigue syndrome.

Chapenko S1, Krumina A, Kozireva S, Nora Z, Sultanova A, Viksna L, Murovska M.J Clin Virol. 2006 Dec;37 Suppl 1:S47-51.

http://www.ncbi.nlm.nih.gov/pubmed/17276369

 

19. Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome

Madlen Loebel,  Kristin Strohschein,  Carolin Giannini,  Uwe Koelsch,  Sandra Bauer,  Cornelia Doebis,  Sybill Thomas,2014

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0085387

 

20. Chronic encephalomyelitis caused by Borrelia burgdorferi.

Case report.[Article in Serbian] Pavlović D, Lević Z, Dmitrović R, Ocić G.Glas Srp Akad Nauka Med. 1993;(43):225-8.

http://www.ncbi.nlm.nih.gov/pubmed/8262411

 

21. Differential aspects of multiple sclerosis and chronic borrelial encephalomyelitis.

[Article in Russian]Spirin NN, Baranova NS, Fadeeva OA, Shipova EG, Stepanov IO.Zh Nevrol Psikhiatr Im S S Korsakova. 2011;111(7):8-12.

http://www.ncbi.nlm.nih.gov/pubmed/21947065

 

22.  Myalgic Encephalomyelitis and Postviral Fatigue States: The Sage of Royal Free disease. 2nd edition. 

A. Melvin Ramsay Gower Medical Publishing, London 1988. http://web.archive.org/web/20130407173551/http://www.cfs-news.org/me.htm

 

23. Method and compositions for diagnosing and treating chronic fatigue immunodysfunction syndrome 

WO 1992005760 A1

Elaine Defreitas, Brendan Hilliard, 1992

https://www.google.com/patents/WO1992005760A1?cl=en28

 

24. Innate Immune Changes in the Peripheral Blood of Chronic Fatigue Syndrome Patients: Risk Factors for Disease Progression and Management (pp. 91-130)

Deborah L.S Goetz, Judy A. Mikovits, Jamie Deckoff-Jones, Francis W. Ruscetti, LANDRES Management Consultant, MAR Consulting Inc., Private CFS Practice, and others, 2014 https://www.novapublishers.com/catalog/product_info.php?products_id=52282

 

25. American Red Cross: Blood Testing

http://www.redcrossblood.org/learn-about-blood/what-happens-donated-blood/blood-testing

 

 

NoSpin

 

 

 

It looks like we have another “Wastebasket” diagnosis in town and its becoming quite the “epidemic”!

“SEID” or “Fibromyalgia,” will be HUGE with those “Hearsay Medicine” practitioners depending on which their colleagues are diagnosing their patients with!  

I suspect,  whichever diagnosis is chosen,  will depend on which one will bring in more money!  

Remember, its all about “Following The Money!“!!!

Whatever happened to what is best for the patient?

 

 

Wastebasket

 

 

So what should it really be?

Next blog post will talk about that!

 

 

“The Other Side Of The Stretcher” (c) 2015

This blog is not for medical advice. For medical advice, you must speak with your physician!

Trolls

Plagiarizers

Credit is given for images and also information in this blog by either google images or the creator of the image or source of information.

If you don’t see credit and you see your image or information,

please leave a note in the comments so credit can be given.

Thankyou!

Advertisements

About The Other Side Of The Stretcher

Nurse turned patient, but not by choice. I was became a Registered Nurse in 1985 when I was 21 years old. That career was cut short the end of 1994 when I was unable to work anymore because of the illness M.E. or Myalgic Encephalomyelitis. I have 3 adult children including twins, A daughter and 2 sons. View all posts by The Other Side Of The Stretcher

2 responses to “Why Partnering with Fibromyalgia Exclusively in NIH Funding is a Problem

  • Sunshinebright

    Anne, the more I read about the dismissal of very real symptoms, the more I get crazy. It’s so confusing and disheartening. Everything is always about the $$$. Great post. You sure covered so many bases.

  • The Other Side Of The Stretcher

    Thankyou 🙂

    I also forgot to mention, which is really an important point, I worked as an RN in NY at the height of the AIDS epidemic and saw the patients who got AIDS from blood transfusions and the first patients I saw were teenagers who had to get transfused every 2 weeks to stay alive.

    So- the Blood Bank issue is still a huge problem, AIDS activists who are still alive have talked about this and the articles are online.

    “Following The Money” was an issue during AIDS too, Millions of dollars were spent and only 1 drug became available after a decade. Here we are 30 years and not 1 drug has been approved under this diagnosis.

%d bloggers like this: