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 STATEMENT FROM THE GRACE CHARITY FOR M.E. CONCERNING THE RECENT LANCET REPORT, JANUARY 2015.

 Our charity would like to add its voice to the condemnation of the report Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial, (Chalder et al., Lancet January 13 2015). This report is yet another attempt by the Wessely School to undermine both science and the character of M.E. sufferers (Myalgic Encephalomyelitis).

 During the PACE trial (White et al., 2011), patients were asked if they agreed with the statement, “I am afraid that I will make my symptoms worse if I exercise.” If they agreed with that statement, they were then labelled as having a fear avoidance of exercise (The Economist January 17 2015, Fear to tread).

 The findings of the Lancet report were that patient fear of the consequences of CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy) affected the outcome of these two therapies. Or, in laymen’s terms, blame the sick patient if CBT and GET don’t work.
 Although the report refers to the condition chronic fatigue syndrome, it is likely that this includes M.E. sufferers. In Chalder’s book Coping with Chronic Fatigue (1995 Sheldon Press), M.E. is said to be the same illness as CFS. Certainly, the media are reporting the said Lancet paper as patients with M.E.

 We believe that M.E. sufferers have every reason to fear activity, but it is a sensible fear due to possible dire consequences. The Lancet report overlooks both anecdotal and scientific research which supports M.E. patients’ good reasons to fear exercise. Between 1955 – 2005, there have been over 2,000 papers showing M.E. to be an organic disorder (quote from Prof. Anthony Komaroff)1, many of these showing abnormal muscle response. Since then, organic illness findings of M.E. have increased abundantly. In 2011, the International Consensus Primer (Carruthers et al.) has included Post -Exertional Neuroimmune Exhaustion (PENE) as a required diagnostic symptom for M.E. This is an international medical acknowledgement of abnormal muscle in M.E. after exercise. In other words, patients feel terrible after exercising and there is a medical reason for it.

 In 2011, a paper by Tom Kindlon was published in a peer reviewed journal, demonstrating deterioration of M.E. sufferers from GET/CBT. Kindlon’s pooled data from several patient surveys, showed that 51.24% of ME/CFS sufferers had been harmed from GET and 19.91%
 from CBT.2 One of these pooled surveys was from the 25% ME Group for severe sufferers, where 82% of participants said that their illness was worsened by Graded Exercise. 93% reported that CBT had been unhelpful. Some sufferers were not severely ill with M.E. until after a course of GET.3 In our own treatment survey, Graded Exercise was reported as the treatment which caused the most harm to sufferers.4

 The Lancet paper was in part funded by the Departments of Work and Pensions and Health (England). One has to keep vested interest in mind regarding the interpretation of the paper’s results. If M.E. patients can be blamed for being ‘uncooperative’ with GET and CBT programmes due to allegedly ‘proven’ fear, then money can be saved via the reductions of welfare and biomedical investigation.

 As a result of the media coverage of this report, M.E. sufferers continue to be unfairly blamed; it can make their relatives sceptical about the illness, causes confusion and further difficulty with welfare, doctors and social services, and condones the waste of public money by printing shoddy, devious research.

 Any fear, most likely, lies with the writers of the Lancet report, who are being increasingly exposed from reporting inaccuracies about CFS/ME, as more biomedical findings come to light.

 They also need to be afraid of possibly breaching an NHS mandate, which states that ICD 10 must be implemented for NHS use. This means that anyone with a diagnosis of M.E. must have it viewed as a neurological disease in the UK.5


 The Grace Charity for M.E.
 24/1/2015
 
2
http://www.itv.com/news/anglia/2012-09-30/mothers-battle-to-get-daughters-illness-diagnosed/

Mother's battle to get daughter's illness diagnosed

30 Sept 2012


Kelly has been diagnosed with Postural Orthostatic Tachycardia Syndrome  Photo: ITV Anglia


 A teenager from Great Dunmow in Essex has spoken of her mother's nine year battle to convince people that she was ill.
Kelly Moss has been in and out of hospital since she was 9 but it was only this year that doctors finally managed to diagnose she was suffering from Postural orthostatic tachycardia syndrome (POTS).
It means her heart rate can rise by 30 beats per minute when she stands.
But it's taken a long time to get to this diagnosis. For the past 9 years Kelly's mum Lorraine has fought to get people to believe her daughter really is ill.
"I was accused of harming my own child, that I was creating her ill health, I was accused of allowing a child to run rings around me and act like she was ill when she was not. I've been accused of everything, from crazy to misguided by a psychiatrist."
Mum Lorraine fought to get Kelly's illness diagnosed Credit: ITV Anglia

 Kelly says the prospect of being taken away from her parents was frightening
"I didn't have a childhood. I had to grow up very quickly at the age of 9 with the things I had to deal with. Intermittently, I was at school when I wasn't at school or in hospital. But it was never the same because of all of my experiences, I was an adult from the age of 9."
In a statement Essex county council said:
"...We take our statutory responsibilities to child protection very seriously and have a duty to take appropriate action and intervention when concerns about children and young people are raised. Any action taken will always have the child's interests at the heart of the decision..."
Kelly says she's determined to get a medical degree so she can use her knowledge to prevent this from happening again.
Her mother wants to take Kelly abroad she so can get proper treatment which she believes has been denied her here.
Video:  http://www.itv.com/news/anglia/2012-09-30/mothers-battle-to-get-daughters-illness-diagnosed/

 
 
3
Dr. Judy Mikovits and Kent Heckenlively gave a talk and presented their book:

 Plague: One Scientist’s Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome, Autism, and Other Diseases

At the University of Minnesota Campus, Cowles Auditorium Book signing event today!
 
A Skyhorse Publishing - Health Choice Event



4
http://www.cdc.gov/cfs/meetings/index.html
Quote
Meetings & Workshops
CDC CFS Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call

The CDC Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call will be held on Monday, February 23, 2015.

Call number:
Participant Code:

Previous Conference Calls

    September 9, 2014
    February 25, 2014
    September 10, 2013
    January 14, 2013
    August 9, 2012

Centers for Disease Control and Prevention
1600 Clifton Rd. Atlanta, GA 30329-4027, USA
800-CDC-INFO (800-232-4636) TTY: (888) 232-6348

I contacted Dr. Unger's office to find out if the 2/23/2015 CDC PCOCA conference call would be taking place because no agenda or call number/participant code has been posted on the CDC website. I was informed that the conference call would take place on 2/13/2015 at 3:00 pm (EST) with Dr. Jose Montoya presenting "information on the Stanford Research program that he directs". The call in number and participant code for this conference should be posted online at http://www.cdc.gov/cfs/meetings as soon as it is available.
5
http://www.healio.com/rheumatology/fibromyalgia/news/online/%7Becedc66c-ec7c-4bd9-b165-b8f62432cf8a%7D/anti-thyroid-antibodies-strongly-linked-to-fibromyalgia-pain-in-patients-with-ra

Anti-thyroid antibodies strongly linked to fibromyalgia, pain in patients with RA   

January 16, 2015

A strong positive association was found between the presence of anti-thyroid antibodies and fibromyalgia and chronic widespread pain in patients with rheumatoid arthritis, according to study results presented at the American College of Rheumatology Annual Meeting.

The study comprised a cohort of 203 patients with rheumatoid arthritis (RA) who had documented presence of anti-thyroid peroxidase (anti-TPO) and anti-thyroglobulin (anti-TG) antibodies. The researchers used logistic regression analyses to determine the statistical significance of the relationships between the thyroid antibodies and the presence of fibromyalgia and widespread pain.

Thirty-four percent of the patients had positive results for anti-TPO, and 35% tested positive for anti-TG. Of the total of patients with positive results for both antibodies, 37% were diagnosed with fibromyalgia or chronic widespread pain.

Logistic regression analyses adjusted by age, sex, diabetes and BMI showed patients with anti-TPO antibodies were more than 3 times more likely to be diagnosed with fibromyalgia. The risk for fibromyalgia in patients with anti-TG antibodies was not statistically significant, according to the researchers.

Patients with either antibody were 2.7 times more likely to be diagnosed with fibromyalgia, or 2.5 times more likely when adjusted for degenerative disease. – by Shirley Pulawski

Reference:

Ahmad J, et al. Paper #401. Presented at: American College of Rheumatology Annual Meeting. Nov. 14-19, 2014; Boston.

 Disclosure: The authors have no relevant financial disclosures.
6
Advocacy News and Issues / Re: How to Oppose NIH/P2P
« Last post by Ess-OriG on Yesterday at 12:28:13 AM »
HHS-IOM and NIH-P2P practices

are

LICENSE to KILL.

LICENSE to continue the SPREAD of M.E. -- ME/CFS.



EXACTLY -- the government's aim IS to bury us.

DECEIT
LIES
COVER-UPS
DECEPTION
CORRUPTION
BULLYING
ABUSE
=
LIVES LOST
LIVES STOLEN


STOP the IOM
STOP the P2P
ADOPT the CCC.
HELP patients -- STOP killing us and stealing our lives away.
7
Advocacy News and Issues / Re: How to Oppose NIH/P2P
« Last post by Patricia on January 23, 2015, 09:34:22 PM »
I still oppose the NIH/P2P. 

I am not looking forward to the roll-out.  I believe the roll-out will be massive and we will be deluged everywhere with media saying we have "yuppie flu," we are afraid of exercise and need psychotherapy to help us overcome our fears.   As patients, we are in for a very hard time.

Look out!  The government is about to bury us!  There will be a tsunami of government media that will drown the interests of M.E. patients.

Margo Channing: Fasten your seatbelts, it's going to be a bumpy night!
(from the movie, All About Eve, 1950)
8
http://www.prnewswire.com/news-releases/immune-therapeutics-inc-announces-agreement-with-krs-global-biotechnology-inc-300024763.html

Immune Therapeutics, Inc. Announces Agreement with KRS Global Biotechnology, Inc.


ORLANDO, Fla. and DUBLIN, Jan. 23, 2015 /PRNewswire/ -- Immune Therapeutics, Inc. today announced the signing of the agreement with KRS Global Biotechnology, Inc. for the compounding, packaging and distributing of its naltrexone tablets.  The tablets will be compounded for shipment in the United States.

KRS Global is a 503B FDA approved Outsourcing Facility capable of compounding naltrexone tablets in various strengths for individual patients in response to a prescription from a licensed physician. 

Immune Therapeutics has exclusive proprietary and legal rights licenses and patents for Low Dose Naltrexone for the following indications: Crohn's Disease, IBS and inflammatory diseases, prostate cancer, lymph proliferative syndrome, including such diseases as malignant lymphoma, chronic lymphocytic leukemia, Hodgkin's lymphoma, and non-Hodgkin's lymphoma, infectious diseases such as chronic herpes virus infections, including chronic genital herpes caused by the herpes simplex virus, Type 2, Fibromyalgia, Parkinson, chronic infections due to the Epstein-Barr virus, and chronic inflammatory conditions including chronic fatigue syndrome, a treatment method for humans infected with HTLV-III (AIDS) virus, including patients clinically diagnosed as suffering from AIDS, and those suffering from AIDS-related complex (ARC).

Seth Elliott, President and Chief Operating Officer of Immune Therapeutics, stated, "This agreement with KRS Global will help people looking to purchase a formulated product while protecting Immune Therapeutics' intellectual property.  We expect that the payments to Immune Therapeutics under the agreement with KRS Global will allow the company to provide funds to Cytocom Inc. so they can complete clinical trials with the FDA for Low Dose Naltrexone in Crohn's Disease, MS, HIV/AIDS, in addition to other indications."

KRS Global is a recognized leader in pharmaceutical compounding, helping Physicians and Veterinarians with medicine precisely customized for each individual patient.  Very few compounding pharmacies in the nation have implemented the quality control standards performed at its facility. Their on-site testing, sterilization and formulations allow KRS Global to provide patients with exactly what they expect to receive from their hospital; a compounded preparation that can be trusted. For more information about KRS Global visit www.GBTBIO.com.

The information contained herein is general in nature and is intended for use only as an informational aid. It does not cover all possible uses, actions, precautions, side effects, or interactions of Low Dose Naltrexone, nor is the information intended as medical advice or diagnosis for individual health problems.

Low Dose Naltrexone has not been evaluated by the Food and Drug Administration (FDA) and is not made under the FDA's GMP requirements. It is compounded in a licensed compounding pharmacy. The compound is for the use of an individual patient who has been prescribed Low Dose Naltrexone by a licensed physician.  The information contained herein is not intended for making an evaluation as to suitability, risks or benefits. Before taking any action, consult your Physician.

About Immune Therapeutics, Inc.

We are a biotechnology company working to combat chronic, life-threatening diseases through the activation and modulation of the body's immune system using our patented immunotherapy. Our products and immunotherapy technologies are designed to harness the power of the immune system to improve the treatment of cancer, infections such as HIV/AIDS, chronic inflammatory diseases, and autoimmune diseases.

Our proprietary technology, therapies and patents include the treatment of a wide range of cancers. Our most advanced clinical programs involve immunotherapy with met-enkephalin (MENK) (sometimes referred to as opioid growth factor) and our Low Dose Naltrexone product (LDN) or Lodonal™, which have been shown to stimulate the immune system even in patients with advanced cancer.

Even though management considers any condition that results in altered-immune response a target for investigation, we will most likely pursue additional investigations for MENK and LDN as valuable candidates in the treatment of autoimmune states such as rheumatoid arthritis and multiple sclerosis; as an adjunct in cancer patients undergoing chemotherapy, radiation treatments or surgery; and as a complement to antibiotics in the treatment of a variety of infectious diseases, including patients with HIV/AIDS, in combination with retroviral drug therapy.

About Cytocom Inc.

Cytocom Inc. is a biotechnology company that will initially focus on developing LDN (Lodonal™) and MENK in the investigation of unmet medical needs in the areas of oncological and inflammatory diseases.

CAUTIONARY NOTE REGARDING FORWARD-LOOKING STATEMENTS

This announcement contains statements, which constitute "forward-looking statements."  Forward-looking statements include any statements related to the agreement with KRS Global, and are generally identified by words such as "believe," "expect," "anticipate," "intend," "estimate," "will," "may," "continue," "should" and other similar expressions.

Forward-looking statements are subject to various risks and uncertainties, many of which are difficult to predict and generally beyond the control of Immune Therapeutics, that could cause actual results and developments to differ materially from those expressed in, or implied or projected by, the forward-looking statements. As a result, recipients should not rely on such forward-looking statements. Subject to compliance with applicable law and regulations, Immune Therapeutics does not intend to update these forward-looking statements and does not undertake any obligation to do so.

Contact: Dennis S. Dobson
President and CEO
Dobson Media Group and
International Investor Relations Services Inc.
203-258-0159
www.dobsonmediagroup.com
SOURCE  Immune Therapeutics, Inc.
 
9
http://www.businesswire.com/news/home/20150123005605/en/Research-Markets-2015-Report-Funded-Research-Chronic#.VMKtpixzDs0

  Research and Markets: 2015 Report into Funded Research in Chronic Fatigue Syndrome (ME/CFS)     

January 23, 2015 12:31 PM Eastern Standard Time   DUBLIN--(BUSINESS WIRE)--Research and Markets (http://www.researchandmarkets.com/research/9pf5qj/funded_research) has announced the addition of the "Funded Research in Chronic Fatigue Syndrome (ME/CFS)" report to their offering.

“Funded Research in Chronic Fatigue Syndrome (ME/CFS)”

  This report will provide global transparency to research funded for Chronic Fatigue Syndrome (ME/CFS) - based on models of NIH definitions for those topic areas.

 Using these models, we will provide you with 5 years of Chronic Fatigue Syndrome (ME/CFS) Grant Funding data from the top global funders of Science Research - representing over 80 different funding organizations worldwide.

 Scope
 
  • Which global funders are providing the most resources in Chronic Fatigue Syndrome (ME/CFS)?
  • Which institutions are receiving the most awards?
  • Which investigators are leading the field in new and current funding/projects?
  • What funds have been targeted in this field for future years (projects won in 2013, 2014 which will fund for the next 2-3 years)
  This is the most forward-looking and current research data source on Chronic Fatigue Syndrome (ME/CFS).

 Funding includes 5 years of data from the major science and biomedical funders in Europe, North America, and Australia.

 For more information visit http://www.researchandmarkets.com/research/9pf5qj/funded_research
 
   Contacts

 Research and Markets
Laura Wood, Senior Manager
press@researchandmarkets.com
For E.S.T Office Hours Call 1-917-300-0470
For U.S./CAN Toll Free Call 1-800-526-8630
For GMT Office Hours Call +353-1-416-8900
U.S. Fax: 646-607-1907
Fax (outside U.S.): +353-1-481-1716
Sector: Healthcare and Medical Devices
 
10
General Discussion / Re: There's Now Coffee to Help You Fall Asleep, 1/22/2015
« Last post by Patricia on January 23, 2015, 05:40:19 PM »
http://countingsheepcoffee.com/

The best way to start your day is now the best way to end it                     
40 Winks (Bedtime Blend) & Lights Out!

 Fotosearch_k10407379_medium height=115

Now you can enjoy your coffee in the evening and get a great night’s sleep. Our Swiss Water® decaffeinated coffee is blended with organic valerian root (herbal sedative) to create a great tasting coffee and help you unwind after a long day. Available in both our original Bedtime Blend / 40 Winks and our stronger version Lights Out! with more valerian added and a bolder taste. We hope you enjoy both the coffee and a well deserved peaceful sleep.
 
More:  http://countingsheepcoffee.com/
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