ME is not CCI -
Listen to experienced advocates & Dr’s. Ron Davis PhD is a Geneticist not a licensed physician. The doctor being praised is not credible and neither is OMF when it comes to Myalgic Encephalomyelitis - they are CFS/SEID. There is no cure for ME and the perception of overlapping symptoms making CCI a part of ME is a scam.
SUPPORTING EVIDENCE RE: GMC COMPLAINT AGAINST DR. ESTHER CRAWLEY 5th July 2011Re: Dr. Crawley's claims and comments as quoted by a freelance journalist in an article published in theBMJ on 22nd June 2011. If the journalist has quoted Dr. Crawley correctly, then this provides yet furtherevidence of Dr. Crawley's unprofessional conduct in making exaggerated, unsubstantiated, untruthful andmisleading claims, calling into question her fitness to practice. If quoted incorrectly or out of context, then Dr.Crawley needs to ask the BMJ to publish a correction with apology for what otherwise amounts to libelagainst those who have raised legitimate concerns and complaints about her conduct and the SMILE pilotstudy. However, that Dr. Crawley should discuss with a journalist a current research project, particularly oneinvolving a vulnerable group such as children and their parents/guardians, in which recruitment and retentionis the primary outcome measure, in the context of the subject and tone of the article, is highly unprofessionaland calls her fitness to practice into question.
Re: BMJ 2011; 342:d3780 doi: 10.1136/bmj.d3780 (Published 22 June 2011)http://www.bmj.com/content/342/bmj.d3780.extract
Letter issued by NRES following scrutiny of complaints in relation to SMILE Lighting Process pilot study
January 6, 2011 AfME, Action for M.E., AYME, CBT/GET, CFS Clinics, CFS Research, Dr Esther Crawley, Lightning Process, SMILE study, ME Association, ME in children, ME Research, The Young ME Sufferers Trust
Letter issued by NRES (6 January 2011) following scrutiny of complaints in relation to SMILE Lighting Process pilot study
February 6, 2019
Expert reaction to letter from the HRA to Norman Lamb regarding the S&T Committee’s inquiry
on Research Integrity and the PACE trial
Reactions to a letter from the Health Research Authority (HRA) to Norman Lamb MP on an inquiry into the PACE trial.
Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford, said:
“The PACE trial authors welcome the findings of the Health Research Authority (UK HRA) review of the ethics and transparency of the trial. Patients with chronic fatigue syndrome, and the healthcare professionals who look after them, can be reassured that the evidence provided by PACE that cognitive behaviour therapy and graded exercise therapy are helpful and safe treatments for Chronic Fatigue Syndrome (CFS) is based on sound science.”
A 4-Day Mindfulness-Based Cognitive Behavioral Intervention Program for CFS/ME. An Open Study, With 1-Year Follow-Up
Background: Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME) is an incapacitating illness in which single treatment interventions seem to have variable effects. Based on an earlier study we have conducted a new study with a concentrated intervention program. The aims of this study were to: (1) explore the clinical course for patients with CFS/ME who participated in a treatment program delivered during four consecutive days, and (2) evaluate their satisfaction with this program.
Methods: 305 patients diagnosed with CFS/ME (Oxford criteria), recruited from a clinical population referred to a specialist outpatient clinic, participated in an open uncontrolled study of the clinical course through 1 year. The study group participated in a 4-day group intervention program, comprised by education, cognitive group therapy sessions, mindfulness sessions, physical activity and writing sessions, within a context of cognitive behavioral therapy, mindfulness, acceptance and commitment model.
Multidisciplinary rehabilitation treatment is not effective for myalgic encephalomyelitis/chronic fatigue syndrome:
A review of the FatiGo trial Mark Vink, Alexandra Vink-Niese, First Published August 6, 2018 Review Article
The FatiGo trial concluded that multidisciplinary rehabilitation treatment is more effective for Chronic Fatigue Syndrome and Myalgic Ecephalomyelitis in the long term than cognitive behaviour therapy and that multidisciplinary rehabilitation treatment is more cost-effective for fatigue and cognitive behaviour therapy for quality of life. However, FatiGo suffered from a number of serious methodological flaws. Moreover, it ignored the results of the activity metre, its only objective outcome. This jeopardizes the validity of FatiGo. Its analysis shows that there was no statistically significant difference between multidisciplinary rehabilitation treatment and cognitive behaviour therapy and neither are (cost-)effective. FatiGo’s claims of efficacy of multidisciplinary rehabilitation treatment and cognitive behaviour therapy for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis are misleading and not justified by their results.
BC Women's Hospital in British Columbia, Canada.
Our goal for the program is to provide patient and symptom-centered care with the support of our multidisciplinary team of health care providers. We emphasize that treatment choice takes patient preferences into account, and that self-care is supported as well as treatment. Central to this is the development of partnership in care, and facilitation of patient involvement in assessment and in treatment decisions. Based on a heavy Psychiatric Slant. CBT can cure everything.
"My experience with Dr. Arseneau was poor because I felt he rushed my appointment and was more interested in giving me his CSS than actually investigating. I encourage anyone to expect someone giving them any form of these labels to be proficient and thorough with immunology mechanisms that typically underlie the very basis of the physiology creating the symptoms. This is in response to someone defending him as "not being an immunologist or neurologist". The best science is now pointing very clearly in the direction underlying immune dysfunction, inflammation and channelopathies (my diagnosis of CASPR2 which is treatable- autoimmune encephalitis - quite new and evolving area of
All of the recommendations for pacing, meditation, diet etc are welcome and helpful but not at the exclusion of making sure there isn't a treatable condition that has been overlooked. Although a very nice man... given a quick label and not much of an investigation."
"While Dr Arseneau may be recognized by the medical community for his work in Central Sensitization Syndrome (CSS), his patients are suffering due to his work on CSS. Once you have been diagnosed with CSS, you are basically cursed as far as receiving any future medical treatment from other doctors. I had a surgeon try to cancel a surgery on me just 5-10 minutes prior to surgery because he had been read the report from Dr. Arseneau with the diagnosis of CSS. (How is telling a patient that their central nervous system over-reacts to pain different than telling a patient that their pain is all in their head?"
"Thanks to doctor Arseneau's diagnosis, the clinic doctor did not examine me in any way - he did not check my temperature, he did not check my blood pressure (which was extremely low and causing me to feel faint), he did not requisition any blood tests for myalgia or anything else, and he did not send me for an ultrasound, to assess the amount of free fluid (blood) in my abdomen. I ended up going back to see another doctor a few days later, who took the symptoms more seriously. All of this because of a diagnosis by a "specialist" and "internalist" who didn't even do any physical or internal exams on me, but instead, assessed me with a questionnaire administered by his interns. Frankly, I am on the fence about whether to believe the theory of central sensitization syndrome or chalk it up to being just the syndrome du jour used to placate difficult patients. The same goes for Chronic Fatigue Syndrome. I understand that it's easier for the doctors who can't figure out what's wrong to simply attach a catch-all syndrome, but ultimately it doesn't help the patient in the slightest. In fact, it instead hurts their credibility with other doctors when something is seriously wrong. Isn't the first rule of being a doctor "to do no harm"?
Dr. Ric Arseneau (biography and disclosures)
Disclosure: Dr. Arseneau is the Director of Program Planning and a clinician at the Complex Chronic Diseases Program (CCDP). Mitigating Potential Bias: Recommendations are consistent with current practice patterns.
What changed my practice
Human beings have been described as “meaning-making machines.”
The need for understanding and explanation is universal. Our patients need an explanatory model to help them understand their illness. If we don’t provide one, patients will create their own or seek one elsewhere. With the help of the internet, a self-diagnosis of adrenal fatigue, systemic candidiasis, or other chronic infection is not uncommon. This can make future interactions with physicians unproductive.
I have found the concept of Central Sensitivity Syndromes (CSS) helpful in explaining CFS and FM to patients, many of whom worry that these terms imply a psychological cause or are simply used as a catch-all for unexplained symptoms. CSS “comprise an overlapping and similar group of syndromes without structural pathology and are bound by the common mechanism of central sensitization (CS) that involves hyper-excitement of the central neurons through various synaptic and neurotransmitter/neuro-chemical activities.” (1) For patients, the main idea is that their brain is perceiving amplified or incorrectly interpreted information. Many identify with the commonly associated light, noise, and food or chemical sensitivity.
Discover whether Earthing Therapy is the perfect anti-inflammatory and anti-oxidant for people recovering from inflammatory diseases? Earthing Therapy is only for wuu woo barefoot hippy, nudist natural health nuts?
The ME community is well aware of the long-time involvement of psychiatrist Dr Michael Sharpe with the insurance company UNUM, of his association with Allied Dunbar and of his recommendation to insurers that claimants with a diagnosis of ME/CFS should be subject to covert video surveillance. The ME community will also recall that on 17th May 1995 Mike Sharpe and Simon Wessely were the main speakers at a UNUM-supported symposium held in London entitled “Occupational Health Issue for Employers” (where ME was described as “the malingerers’ charter”) at which they advised employers how to deal with employees who were on long-term sickness absence with “CFS”. Moreover, the ME community is hardly likely to forget that in UNUM’s “Chronic Fatigue Syndrome Management Plan”, ME/CFS is described as “Neurosis with a new banner” and that same document states “UNUM stands to lose millions if we do not move quickly to address this increasing problem”. Members of Parliament are on record as being gravely concerned about the difficulties which their constituents with ME/CFS suffer at the hands of UNUM, as recorded in the House of Commons debate chaired by Sir Alan Haselhurst on 21st December 1999 (reference: Hansard 147WH-166WH).
Taking account of the evidence as a whole, we did not consider that it was sufficient to substantiate that the Gupta Programme could treat “Fibromyalgia”, “Chronic Fatigue Syndrome (CFS) or ME” and we therefore concluded that the claims were misleading. The ad must not appear again in its current form. We told Harley Street Solutions Ltd not to state or imply that the Gupta Programme could treat “Fibromyalgia”, “Chronic Fatigue Syndrome (CFS) or ME” or “Electrical Sensitivities”. We told them to ensure that they held substantiation for any similar claims relating to medical conditions or symptoms.
The arrogance of psychiatry in dismissing ME/CFS and Fibromyalgia as biological diseases and ‘lumping’ them into medically unexplained symptoms is astounding - and this paper is as abhorrent as they come
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
The Phil Parker Lightning Process® (LP) is a training course that focuses on the science behind how the brain and body interact; it gives you powerful tools to use this brain-body link to influence your health and life. The tools involve gentle movement, meditation-like techniques and mental exercises. https://lightningprocess.com/what-is-the-lightning-process/
The ASA understood that the Chrysalis Effect was a support programme, which included videos, audios, downloadable content with meditation and relaxation techniques, advice, including from nutritionists and energy therapists and access to other online material, including a supporters’ forum, blog, news updates and inspirational stories from sufferers of Chronic Fatigue Syndrome.
While we noted Chrysalis Effect provided an example of a self-reporting questionnaire, including the results recorded by four patients, which recorded some improvement in the symptoms experienced by the participants, we were concerned that they had not provided robust evidence, such as clinical trials or studies, to support their claims that the programme would enable consumers to achieve "complete recovery" from Chronic Fatigue Syndrome. Chrysalis Effect maintained they were in the process of collating evidence to substantiate the claims, however, we reminded them of their obligations under the CAP Code to hold appropriate evidence to substantiate claims prior to publication. We considered that testimonials from individual sufferers did not constitute a suitably robust body of evidence to demonstrate the effectiveness of the Chrysalis Effect programme in offering "complete recovery" from Chronic Fatigue Syndrome. Because we had not seen any evidence to demonstrate the efficacy of the Chrysalis Effect programme for treating Chronic Fatigue Syndrome, we concluded the claims were therefore misleading.