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From Our Readers: Comments and Suggestions – 6/18/14

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A Complete and Utter Joke

Re: VIDEO: How’s That Recovery?

This is a complete and utter joke, created by the likes of Wesley and the rest of his coven, in London, with the aid and release of finances, by the powers that be. and his marital connections in Parliament…
This therapy, is as useless as the very people who formulated it…
It’s nothing more than a money spinner, for these parasites, those devils that control and manipulate society, for their own selfish gain…

If there is such a thing as hell, long may they roast…  ~ Posted by: maryannemhope, May 22, 2014

We need to learn from others 

Re: ME/CFS Manifesto

There are organizations out there like the Crohn’s and Colitis Foundation of America and the Leukemia and Lymphoma society who are very well organized and very effective at both obtaining funding from the government and from individuals. ME/CFS needs such an organization for the very reasons you state in your article. I am in no position to start such an organization, but I would certainly contribute my time and expertise where and when I can. ~ Posted by: jjbiener, May 21, 2014

Nothing Works

Re: Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?

My son and i both have the same issues.. but yet treated for two different diagnoses. I was just told i had insomnia but nothing ever really treated. Just given ambient, which never works. And cymbalta for fibromyalgia, depression anxiety. Still nothing works. My son on the other hand said he grew to much in a year and his fainting spells were due something called P.O.T.S. Syndrome. He sleeping issues as well. Was just insomnia depression, and anxiety. Was given seriquill and effexor. Still nothing on him. He was told to eat salty food and drink gatoraide. Due to his blood pressure dropping as well. Strange how we can all have same effects but none diagnosed same things. ~ Posted by: katlea75, May 2, 2014


Re: The Glutathione System: A New Drug Target in Neuroimmune Disorders

You can orally supplement GSH levels with the bioavailable form, Acetyl Glutathione.
Regular glutathione supplements have also been proven to increase levels when taken in high doses long term. However much of the supplement goes to waste due to damage caused in the digestive tract. For the best results use an Acetyl glutathione supplement paired with GSH precursors like N Acetylcysteine, R-alpha lipoic acid and Silymarin. ~ Posted by: GlutathionePRO, Apr 30, 2014

Liposomal glutathione is also very effective in raising levels of the glutathione enzymes in the body, and in fact, ProHealth sells just such a product. http://ow.ly/wjK3E ~Posted by: richcarson, Apr 30, 2014

The sublingual GSH does work. In fact you can take any powdered version of GSH under the tongue for about 1 minute and blood levels rise significantly. ~Posted by: IanH, Apr 29, 2014


Re: Declining Production: Exercise Study Reveals Broad Declines in Energy Output in Chronic Fatigue Syndrome

This study definitely helped me gain insight into the obvious. For years I have been saying the symptoms, muscle pain, brain fog, extreme fatigue are signs of a lack of oxygen due to some metabolic dysfunction. Aren’t these the EXACT same symptoms mountain climbers get when they reach higher altitudes and need supplemental oxygen? PLEASE, how long is it going to take to stop studying the symptoms and start looking for a cause and a cure? I am afraid it is like diabetes, they have known diabetics lack the ability to produce/regulate insulin for over 90 years, but we are no closer to an actual cure. ~Posted by: schmittenhammer, May 30, 2014

Good Article

Re: VIDEO: Dr. Shepherd Talks About Symptoms and Treatments for ME/CFS

A good article overall. I like his symptom grouping. However knowledge of nutritional supplementation is wanting. I suspect Dr. Shepherd like many have a bias against such treatments. There is plenty of evidence that mitochondrial support regime as used for mitochondrial myopathy is better than amitryptiline and gabapentin. For symptomatic treatment, what we now need are drugs to reduce the arteriolar shunting in order to improve blood flow. ~ Posted by: IanH, Jun 7, 2014

Thank You For the Template

Re: Advocates to NIH – “Pull the P2P!”

I appreciate the template for writing Dr Collins. It took just a few moments to add my voice to the others who are trying to stop the P2P. One look at the agenda reveals the uniformed bias (or should I say BS) that is being pushed by this process. It is positively mortifying how far off the mark they are concerning our lives and our health. ~ Posted by: me/cfs, Jun 5, 2014

A Reply to Mr. Wessely

Re: Scottish Good Practice Statement vs. Wessely School of CFS Treatment: ‘Collision of Two Worlds’

Dear Mrs. Smith and Mr. Wessely,

As a Scottish man who has a family member with ME/CFS, I wish to respond to Mr. Wessely’s paper, ‘Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development’ published in February 2014 which unfairly criticised the Scottish authorities, ScotPHN and it’s Health Care Needs Assessment Group and their criteria for ME/CFS. I wish to refute Mr. Wessely’s argument and paper in a logical, rational and measured manner. I have drawn on evidence and facts to support my case. The Scottish health authorities have made their decision and I and many others support it on scientific and medical grounds, while repudiating the presumptions and assumptions of some psychiatrists who have shown a strong disregard for scientific evidence and facts in the past. And further representations of support, including this letter, will be given to the ScotPHN and other Scottish parliamentary bodies and medical bodies. The English and Welsh health authorities and doctor and patient organisations are welcome to copy our example in this.

Resolving of issues raised in Mr. Wessely’s paper

“it is possible that the objective and subjective cannot be synthesised, and appear mutually contradictory.”

“What happens when, at first sight, the results of a considerable quantity of what we now call evidence-based medicine firmly point in one direction, while the narrative and individual accounts, at least those that are readily available, perhaps even more vehemently say the opposite. How and why can this happen, and does it matter?”

Mr. Wessely’s career has been built on subjective assessments and on assumptions and presumptions about ME/CFS, which by their very nature are subjective. He has no lab tests or objective evidence to support his own case. In fact, and quite ironically, he strongly discourages lab tests and objective evidence. His obsession with preventing the diagnosis / identification of objective evidence via lab tests and other biological based tests in ME/CFS and Fibromyalgia is his most serious defect and flaw, in a medical and scientific sense. The NICE clinics’ refusal to do necessary lab tests and other hospital tests for this illness being the most obvious example of psychiatric interference in the NICE guidelines on ME/CFS and their operation. Depriving patients of the objective evidence means Mr. Wessely and his ilk can conveniently claim that the objective evidence does not exist / is not there, and this forces a reliance on subjective data which can be viewed and interpreted in many different ways. In most cases a psychiatrist will interpret this to suit his own agenda.

Furthermore, Wessely rejects most of the objective scientific evidence and research into ME/CFS as it contradicts his own personal subjective views and subjective data. So Mr. Wessely himself is the living embodiment of the contradiction between subjective and objective. He is in effect condemning himself in the above sentences.

“We propose that, if followed, this document would lead to the adoption of dangerous diagnostic criteria for ME/CFS, as well as preventing patients from making informed decisions about treatment options, and discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning.”

“The criteria that the Canadian consensus group have produced have not been operationally defined or validated”
“The document itself seems to have fallen foul of the key to guideline development in that there is a lack of robust peer review”

How very convenient of Mr. Wessely to mention dangerous diagnostic criteria. His own Oxford criteria which has strong psychiatric bias and excludes biological evidence accumulated over many years of research, has proved very dangerous. Similarly, the Fukuda criteria in 1994 also omitted important biological evidence and facts, and had psychiatric bias. This was recently proven in the release of letters exchanged between Dr. Straus and Dr. Fukuda in 1994. Here is a listing of people who have died as a result of medical neglect based on the premise that ME/CFS was a psychiatric illness, “all in the head” or a “non illness” as Mr. Wessely claimed in the past – http://www.ncf-net.org/memorial.htm . Yes indeed, Mr. Wessely, it is your own criteria and the psychiatric definitions of CFS which have proved most dangerous.

As regards patients making “informed decisions”, well that depends on who is doing the informing, is it medical doctors and researchers with many years experience of the illness and of the biological and objective evidence OR is it psychiatrists with a set of presumptions and assumptions ?

Wessely’s use of the term “evidence based medicine” is intriguing and contradictory, the evidence suggests that psychiatric based treatments do not work, the failed PACE trial being one example, and that certain biological treatments which address the biological abnormalities, dysfunctions and infections found in ME/CFS do work. I would draw Mr. Wessely’s attention to some research papers which details the lack of effectiveness and safety of psychiatric based treatments in ME/CFS – www.me-ireland.com/scientific/16.htm 

As for evidence based treatments, and use of the Canadian criteria in research, sadly some psychiatrists slyly and deviously worked to prevent and stop biological based government funded research into ME/CFS for many years. Many excellent biological based research proposals were rejected over the years by government bodies, on the advice of certain psychiatrists, thus depriving millions of patients of promising biological based treatments. And depriving the scientific community of “robust peer review” and “evidence based medicine”. This activity by certain psychiatrists was very shameful, but some people have no shame or sense of shame.

Despite these obstacles, there is some scientific evidence to support the assertions in the Canadian criteria, they are referenced in the document itself and on the following international web sites http://www.paradigmchange.me/cfs-info/me-and-cfs-medical-abnormal/me-cfs-and-medical-abnormal.pdf and http://www.me-ireland.com/right.htm#l

Mr. Wessely’s own Oxford criteria for CFS was drawn up by psychiatrists for psychiatrists, it lacked an adequate proper guideline development process, it lacked robust multi-disciplinary peer reviews, it replicated studies and double blind placebo controlled studies, it lacked conclusive results, it lacked statistical analysis, it lacked conclusive evidence and it conveniently omitted important biological and scientific evidence at the time. It was flawed on many levels, and was not fair and balanced. And this Oxford criteria still lacks these necessary components. Mr. Wessely would need to examine his own flaws, mistakes and errors before pointing the finger at others.

Mr. Wessely conveniently forgot to mention in his Oxford criteria and research papers that the Holmes CFS criteria of 1988 specifically excluded psychiatric illnesses from the definition and from the diagnostics. Yet Mr. Wessely and his disciples have invented all manner of psychiatric illnesses, including somatoform disorders, somatic syndromes and psychosomatic illness to describe and define CFS. He directly contradicts the findings and conclusions of the Holmes committee of the CDC which met to define CFS in 1988. Mr. Wessely seems to be behaving like a loose cannon, inventing all kind of novel stuff for his own purposes. This is not scientific or medically sound.

“a result of patient group pressure on politicians who then outsource the work to a panel the patient group select, leading to a one-sided document.”

Mr. Wessely conveniently forgets that his own Oxford criteria was a one sided document devised and approved by psychiatrists for psychiatrists, with no patient input, and this document was used to apply pressure on politicians and civil servants to view ME/CFS as a psychiatric illness and integrate this fallacy into the newly established NICE clinics.

Mr. Wessely fails to differentiate between ME and CFS, and the origins of both illnesses. There are differences, but he merges the two into one, to create an artificial psychiatric illness which tells one nothing about either illness.

“ This is the view of most neurologists: in a 2011 survey of neurologists working in the UK, 84% did not consider that ME or CFS was a neurological condition”

There are some neurological abnormalities in subgroups of ME/CFS and this has been established by scientific studies, some of which are mentioned here at international sites http://www.paradigmchange.me/cfs-info/me-and-cfs-medical-abnormal/me-cfs-and-medical-abnormal.pdf and http://www.me-ireland.com/right.htm#l . Information about ME/CFS provided to doctors and neurologists in the UK via medical books, journals, newsletters, the press and media for 20 years have stated that ME/CFS is a psychiatric or psychological illness, that it is “all in the mind” and a “non illness”. It has been the subject of ridicule and jokes in some journals and newsletters. Some psychiatrists like to joke and laugh about ME/CFS, and this in itself explains a lot. The ‘Wessely school psychiatrists’ and their Oxford criteria have played a major role in this. This explains the views of the neurologists mentioned above.

In the paper, Mr. Wessely mentions and praises the NICE and it’s criteria for ME/CFS and contrasts it with ScotPHN. The NICE criteria was developed by and for psychiatrists, it has obvious psychiatric bias, and rejects the biological aspects of ME/CFS. There was also evidence of censorship, bias in literature reviews, bias in the CFS definitions accepted, and conflicts of interest in it’s development for NICE. It was not a gold standard guideline development process, it was a purely biased psychiatric guideline development process, poor in quality and in delivery.

Mr Wessely whinges about verbal and personal attacks on psychiatrists. Yet he neglects to mention the attacks on ME/CFS patients both verbal and physical resulting from the stigma of psychiatric illness and being ridiculed, insulted and humiliated in public. People with real or alleged psychiatric illnesses are seen as vulnerable and easy targets in so called “civilised societies” in Europe and North America, and are regularly attacked. There are many cases of ME/CFS patients, including adults and children, being bullied and insulted and mocked for their illness, and several cases of aggression and violence against patients, all of it caused by the psychiatric label. Furthermore, many patients have suffered relationship difficulties and marital breakdown, separation and divorce as a result of the psychiatric stigma and the neglect of the illness resulting from psychiatric prejudices. Many people have lost careers from this medical neglect and psychiatric label. So Mr. Wessely, you and your views have inflicted considerable abuse, violence and pain on many patients

The studies Mr. Wessely quoted regarding exercise and CBT were flawed, failed to identify ME/CFS patients using strict diagnostic criteria, failed to identify severe cases of ME/CFS (those who are bed ridden and those in wheelchairs), recruited psychiatric patients using Oxford and Fukuda criteria, and the results were weak and inconclusive. There are no recoveries from exercise and CBT in ME/CFS, because the biological abnormalities, dysfunctions and infections are not being treated. Mr. Wessely conveniently omits to mention that patients have fully recovered from anti-viral and immune system treatments in some clinical studies. Furthermore, Mr. Wessely’s statements about the benefits of exercise and CBT in ME/CFS are contradicted by several studies and scientific evidence, which show that exercising seriously ill ME/CFS patients with muscular, cardiac, vascular and mitochondria abnormalities is dangerous, some research papers are listed here at an international web site www.me-ireland.com/scientific/16.htm 

Mr. Wessely needs to made aware that some psychiatrists and doctors have been guilty of presuming a person to have a psychiatric illness when in fact they did not have one, but had a serious physical, biological illness. One case which comes to mind is that of a woman who had Chronic Lyme disease. The psychiatrists claimed she had a psychiatric illness and that it was “all in her head”. After going here and there to several doctors, and getting no satisfaction, she eventually found a doctor who carried out many intensive tests and diagnosed her with MS. A few years later she got some more tests and was diagnosed with Chronic Lyme disease, with neurological abnormalities. Apparently it has some similar symptoms to MS. She got treatment for Chronic Lyme disease, and her condition improved and she recovered. This was certainly a lot more effective than CBT, GET and exercise therapy as recommended by psychiatrists to her. So the psychiatrists were proven wrong. The presumptions, assumptions and subjective views of the psychiatrists were wrong, and possibly dangerous and life threatening to the woman involved. There have been many similar cases like this worldwide. This article was in the British press recently, and drew much attention from people. This case and many other cases like it worldwide certainly clarifies a lot of issues for ME patients and their doctors.

Mr Wessely cites in his paper on a few occasions that ME/CFS is a controversial illness. This a very interesting point. Mr. Wessely persistently refuses to look at and accept the objective biological evidence from scientific studies, and this is the main controversy in this illness. In this, he denies himself valuable information, thus depriving himself and his colleagues of vital facts relating to this illness. This is entirely his own decision and he has not been put under any duress or pressure from patients or doctors to arrive at this decision.

In the course of life, there will always be misperceptions and misunderstandings arising from lack of knowledge of the full facts, and indeed refusal to look at the facts. In all matters of science, health care, scientific research, sociology (including disability rights), differentiating between what’s alleged, what’s subjectively perceived, what’s popular, what’s corrupted or manipulated in any way, what’s unchallenged and more importantly what’s proved and verified, and represented is the real issue here. This was the essence of Popper’s empirical falsification theory. Forensic analysis and forensic level testing is a necessary bedfellow in this affair, especially when one has to “find the truth hidden within layers and layers of lies, deceptions, half-truths, conflicts of interest, misdirections and obfuscations” and this is always challenging and divisive. The biological facts and evidence that ME and CFS are physical and biological illnesses, predominantly immunological, neurological and endocrinological are known and proven yet somehow some persons wish to ignore and/or reject the scientific facts. And in the normal course of events, this creates division and controversy.

I will be making these facts and information available to the Scottish health authorities and the health authorities in other countries. We still live in a democracy in the UK and people still have the right to question and to speak out, and to engage in scientific debate. The purpose of this letter was to refute Mr. Wessely’s paper in its entirety, and to provide a proper and logical examination of scientific facts, evidence, and truth. It is not to abuse anyone, though many, many patients have suffered abuse and worse over the years at the hands of those who dismiss their illness as psychiatric / psychological. I hope this clears up the situation. Best Regards, Andrew Campbell, Scotland ~Posted by: Braveheart99, May 23, 2014


Re: The delayed fatigue effect in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

I just don’t understand these articles and conclusions. I have suffered with symptoms since 1990 or before. It started with pain everywhere, flu symptoms, ect….where I am from, the doctors look at me like I am crazy and never give me test or anything. My illness has been a nightmare to say the least!!! When I first got sick, I would have spells with the least bit of stress. My brain would feel like it was going to shut down. Soon after, I would be so mentally and physically fatigued, that I would think I was going to pass out and never recover. It is 20 years later and I am worse than ever. I can barely function to add 2plus2 some days. So,how can this article state these facts by just testing them??? Or- do they even have CFS??? Or do I???? I hope before I leave this world I pray that all sufferers of this nightmare from hell are shown some compassion and get relief!!!!! Stay on your doctors and if you are not too sick, don’t let them humiliate you and make you feel like you are not worth living!! ~ Posted by: shianne7, May 21, 2014

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