Thursday, 8 December 2016

Helen Roseveare (1925-2016) A Tribute


By Catherine Mackenzie, Christian Focus Publications, 7 December 2016

Christian Focus Publications would like to extend its sincerest condolences to the family and friends of our dear Helen Roseveare, who passed away this morning. She dedicated her life to serving others even in the deep trials of life. She pioneered vital medical work in the rainforests of what is now the Democratic Republic of Congo and was an internationally respected speaker with WEC ministries. We are thankful at Christian Focus for Helen’s ministry through the books we have been blessed to publish. She spent her life in service for the Lord and today she is with Him, worshipping Him, in heaven.


Catherine Mackenzie, Children’s Editor at Christian Focus, shares the impact Helen Roseveare had on her life.

This morning a good friend and encourager Helen Roseveare passed away, she had been longing to go home to be with Christ. Now this has happened we who remain look back at her life and rejoice in the work that the Lord gave her and in the witness she gave to his worthiness.

It was eleven years ago that I met Helen Roseveare for the first time. She had not long celebrated her eightieth birthday. I’d read her books and knew her story and somehow or other I had been invited to stay with her in Belfast. It was great to actually meet one of my heroines. She was not only encouraging, she was challenging. It was an environment – all be it just for a weekend – where I felt safe to be honest with her and Pat, her friend, about the challenges and struggles of my own little life. Even though she had been through so much herself (if you don’t know what I mean then read her books) my problems didn’t feel too insignificant to share. And the words she gave me before I left on the flight from Belfast to Inverness were straight forward – just telling me to keep on going. And I’m thankful to her and to God that I have through His strength.

After that she came over to my congregation to do a conference. It was there that she gave, as part of her message, four little words that I believe were the backbone to her life and reinforced, for me, the message of her books, the message she gave me before I left Belfast and the message her Lord and Saviour, Jesus Christ, gives all believers.

“Jesus is Worth it”.

Towards the end of that conference I had the pleasure of taking her and Pat for a tour of the Black Isle – a Scottish peninsula near Inverness. What took place at lunch that day is one of several distinct ‘Helen and Pat’ memories that will stay with me for the rest of my life. If you’ve not met either of them – let me describe these two women of God… in two words (believe me I could pick another 100 words to describe them and I wouldn’t do them justice.)

Smart. They both graduated in medicine at a time when to be a female graduate in any discipline like this was rare.

Cosmopolitan. Both travelled extensively – before the easy days of online booking and satnav.

But if you had been the couple sitting beside us in the restaurant that day you wouldn’t have looked twice. You would have presumed ‘they’re just two little old ladies’. But that’s one point where the church and the world differs – God’s kingdom never puts the word ‘just’ before any category of believer – particularly little old ladies.

Our neighbouring diners were given a visual and audible lesson in this when, after lunch, Pat and Helen’s conversation went as follows:

“I don’t think we’ll ever be able to get back to Afghanistan but it is a beautiful country, and the Lord is at work there…” – or words to that effect.

As my chin dropped I could see the looks on the people at the table beside us as they turned and stared. Two women they had just spent the last hour ignoring were talking about a trip they had made to what was now one of the most notoriously violent countries in the world.

Helen and Pat started reminiscing about people who had lived and worked in that region and about the brief time they had spent in a nation that was now in the thick of a conflict that threw up words like Taliban and Terrorist.

I drove them back to my parent’s house and before too long they were on their way back to Belfast discussing, no doubt, their plans for the development of the girl’s clubs they were involved in and the future fundraising for their local church.

So don’t make assumptions about little old ladies… especially when you hear the word church and missionary in the same sentence … they may very well have been where we will never go, have done what we wouldn’t dream of, and have given up what we just aren’t willing to.

Helen Roseveare was a little old lady, during the time I knew her, but really age didn’t come into it. She was a woman after God’s own heart and Jesus was the one that her heart longed after. She’s with him this morning – still part of the church as she worships more fully in heaven. We who remain, continue as she did once to long for home.


Thursday, 1 December 2016

Parliamentary Questions asked by MP Kelvin Hopkins


Kelvin Hopkins, Member of Parliament for Luton North, has addressed some written parliamentary questions about ME/CFS research and treatment recommendations to the Department of Health and Department for Business, Energy and Industrial Strategy.

He asked if the Secretary of State for Business, Energy and Industrial Strategy will request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred; and if he will prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted. The Department for Business, Energy and Industrial Strategy indicated on 25th November that it will not be possible to answer these questions within the usual time period and that answers are being prepared and will be provided as soon as they are available.

Two further questions by Kelvin Hopkins, which are currently awaiting answers, ask the Secretary of State for Business, Energy and Industrial Strategy, if he will take steps to identify those responsible for the Medical Research Council’s policies towards ME research over the last decade; and if he will seek those people’s removal from positions of influence over future of ME research; and if he will review the policy of the Medical Research Council (MRC) in so far as it relates to addressing the dissatisfaction of ME patients with MRC’s approach in this area.

Kelvin Hopkins also asked questions of the Secretary of State for Health regarding review of the NICE guideline and treatment recommendations.  The answer was –
The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for ensuring that its guidance remains up to date. NICE has advised that it has brought forward the next review date for its guidance on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis from 2019 to 2017 to coincide with the expected publication of relevant new evidence.
NICE’s aim is to make a decision on whether an update of the guideline is required by the end of 2017.

You can find the parliamentary questions and answers here –

Short link – http://bit.ly/2gyJ0il

The Opposing MEGA petition organisers have not been in contact with Kelvin Hopkins, but these parliamentary questions are relevant to our rejection of the call by MEGA for ‘mainstream research funding’ which stands to amount to at least £9m.

MEGA (M.E./CFS Epidemiology and Genomics Alliance) is a project of the CFS/ME Research Collaborative (CMRC).  The CMRC formed in 2013 following on from the last CFS/ME ‘Expert Group’ of the Medical Research Council (MRC).

The MRC co-funded the £5m+ PACE trial, designed to provide evidence that the psycho-behavioural and graded exercise therapies recommended by the National Institute for Health and Care Excellence (NICE) are effective and cost effective treatments for ME/CFS, along with the Department for Work and Pensions and other co-funders.

The PACE trial was led by Professor Peter White of Queen Mary University London (QMUL). The university spent some £200k of public funds appealing a decision by the Information Commissioners Office for release of raw data from the trial for analysis by independent researchers.  A tribunal upheld the ICO decision, published August 2016.

Professor Esther Crawley of the University of Bristol relies on the PACE trial as research evidence to support funding applications for studies into paediatric ME/CFS.  She stated, during the extensive media coverage of her new FITNET trial at the beginning of November 2016, that PACE was a “great, great study”, and further demonstrated a lack of comprehension by misrepresenting the results of the recent reanalyses of the PACE trial data.

Esther Crawley is Vice-Chair of the CMRC and is listed by MEGA as an applicant in their petition to mainstream research funders.  MEGA announced on 3rd October 2016 that Peter White had retired from the group and will have an advisory role.

Confusingly then, Chair of the CMRC Professor Stephen Holgate, has put in writing that MEGA and the CMRC have no connection with the PACE trial or Peter White now that he has retired.

It is refreshing to read that Kelvin Hopkins has asked such pertinent parliamentary questions, as the answers that various people are receiving in writing from members of the CMRC Board about MEGA sound as though they are coming from establishment politicians rather than scientists or medical doctors, and only serve to make us ever more certain that we are right to have no confidence in MEGA.

You can cast your vote against giving more millions of pounds of ‘mainstream funds’ to anyone connected to highly suspect research activities by signing our petition Opposing MEGA – https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs



Friday, 25 November 2016

Silent Killer Hidden in Your Kitchen Pantry: MSG



A widespread and silent killer that’s worse for your health than alcohol, nicotine and many drugs is likely lurking in your kitchen cabinets right now.

“It” is monosodium glutamate (MSG), a flavor enhancer that’s known widely as an addition to Chinese food, but that’s actually added to thousands of the foods you and your family regularly eat, especially if you are like most Americans and eat the majority of your food as processed foods or in restaurants.

MSG is one of the worst food additives on the market and is used in canned soups, crackers, meats, salad dressings, frozen dinners and much more. It’s found in your local supermarket and restaurants, in your child’s school cafeteria and, amazingly, even in baby food and infant formula.

MSG is more than just a seasoning like salt and pepper, it actually enhances the flavor of foods, making processed meats and frozen dinners taste fresher and smell better, salad dressings more tasty, and canned foods less tinny.

While MSG’s benefits to the food industry are quite clear, this food additive could be slowly and silently doing major damage to your health.

What Exactly is MSG?

You may remember when the MSG powder called “Accent” first hit the U.S. market. Well, it was many decades prior to this, in 1908, that monosodium glutamate was invented. The inventor was Kikunae Ikeda, a Japanese man who identified the natural flavor enhancing substance of seaweed.

Taking a hint from this substance, they were able to create the man-made additive MSG, and he and a partner went on to form Ajinomoto, which is now the world’s largest producer of MSG (and interestingly also a drug manufacturer). 

Chemically speaking, MSG is approximately 78 percent free glutamic acid, 21 percent sodium, and up to 1 percent contaminants.

It’s a misconception that MSG is a flavor or “meat tenderizer.” In reality, MSG has very little taste at all, yet when you eat MSG, you think the food you’re eating has more protein and tastes better. It does this by tricking your tongue, using a little-known fifth basic taste: umami.

Umami is the taste of glutamate, which is a savory flavor found in many Japanese foods, bacon and also in the toxic food additive MSG. It is because of umami that foods with MSG taste heartier, more robust and generally better to a lot of people than foods without it.

The ingredient didn’t become widespread in the United States until after World War II, when the U.S. military realized Japanese rations were much tastier than the U.S. versions because of MSG.

In 1959, the U.S. Food and Drug Administration labeled MSG as “Generally Recognized as Safe” (GRAS), and it has remained that way ever since. Yet, it was a telling sign when just 10 years later a condition known as “Chinese Restaurant Syndrome” entered the medical literature, describing the numerous side effects, from numbness to heart palpitations, that people experienced after eating MSG.

Today that syndrome is more appropriately called “MSG Symptom Complex,” which the Food and Drug Administration (FDA) identifies as “short-term reactions” to MSG. More on those “reactions” to come.

Why MSG is so Dangerous

One of the best overviews of the very real dangers of MSG comes from Dr. Russell Blaylock, a board-certified neurosurgeon and author of “Excitotoxins: The Taste that Kills.” In it he explains that MSG is an excitotoxin, which means it overexcites your cells to the point of damage or death, causing brain damage to varying degrees — and potentially even triggering or worsening learning disabilities, Alzheimer’s disease, Parkinson’s disease, Lou Gehrig’s disease and more.

Part of the problem also is that free glutamic acid is the same neurotransmitter that your brain, nervous system, eyes, pancreas and other organs use to initiate certain processes in your body.4 Even the FDA states:

“Studies have shown that the body uses glutamate, an amino acid, as a nerve impulse transmitter in the brain and that there are glutamate-responsive tissues in other parts of the body, as well.

Abnormal function of glutamate receptors has been linked with certain neurological diseases, such as Alzheimer’s disease and Huntington’s chorea. Injections of glutamate in laboratory animals have resulted in damage to nerve cells in the brain.”

Although the FDA continues to claim that consuming MSG in food does not cause these ill effects, many other experts say otherwise.

According to Dr. Blaylock, numerous glutamate receptors have been found both within your heart’s electrical conduction system and the heart muscle itself. This can be damaging to your heart, and may even explain the sudden deaths sometimes seen among young athletes.

He says:

“When an excess of food-borne excitotoxins, such as MSG, hydrolyzed protein soy protein isolate and concentrate, natural flavoring, sodium caseinate and aspartate from aspartame, are consumed, these glutamate receptors are over-stimulated, producing cardiac arrhythmias.

When magnesium stores are low, as we see in athletes, the glutamate receptors are so sensitive that even low levels of these excitotoxins can result in cardiac arrhythmias and death.” 

Many other adverse effects have also been linked to regular consumption of MSG, including:

Obesity
Eye damage
Headaches
Fatigue and disorientation
Depression

Further, even the FDA admits that “short-term reactions” known as MSG Symptom Complex can occur in certain groups of people, namely those who have eaten “large doses” of MSG or those who have asthma.

According to the FDA, MSG Symptom Complex can involve symptoms such as:

Numbness
Burning sensation
Tingling
Facial pressure or tightness
Chest pain or difficulty breathing
Headache
Nausea
Rapid heartbeat
Drowsiness
Weakness

No one knows for sure just how many people may be “sensitive” to MSG, but studies from the 1970s suggested that 25 percent to 30 percent of the U.S. population was intolerant of MSG — at levels then found in food. Since the use of MSG has expanded dramatically since that time, it’s been estimated that up to 40 percent of the population may be impacted.

How to Determine if MSG is in Your Food

Food manufacturers are not stupid, and they’ve caught on to the fact that people like you want to avoid eating this nasty food additive. As a result, do you think they responded by removing MSG from their products? Well, a few may have, but most of them just tried to “clean” their labels. In other words, they tried to hide the fact that MSG is an ingredient. How do they do this? By using names that you would never associate with MSG.

You see, it’s required by the FDA that food manufacturers list the ingredient “monosodium glutamate” on food labels, but they do not have to label ingredients that contain free glutamic acid, even though it’s the main component of MSG. There are over 40 labeled ingredients that contain glutamic acid, but you’d never know it just from their names alone. Further, in some foods glutamic acid is formed during processing and, again, food labels give you no way of knowing for sure.

Tips for Keeping MSG Out of Your Diet

In general, if a food is processed you can assume it contains MSG (or one of its pseudo-ingredients). So if you stick to a whole, fresh foods diet, you can pretty much guarantee that you’ll avoid this toxin. The other place where you’ll need to watch out for MSG is in restaurants. You can ask your server which menu items are MSG-free, and request that no MSG be added to your meal, but of course the only place where you can be entirely sure of what’s added to your food is in your own kitchen. To be on the safe side, you should also know what ingredients to watch out for on packaged foods. Here is a list of ingredients that ALWAYS contain MSG:

Autolyzed Yeast
Calcium Caseinate
Gelatin
Glutamate
Glutamic Acid
Hydrolyzed Protein
Monopotassium Glutamate
Monosodium Glutamate 
Sodium Caseinate
Textured Protein
Yeast Extract
Yeast Food
Yeast Nutrient  

These ingredients OFTEN contain MSG or create MSG during processing:

Flavors and Flavorings
Seasonings
Natural Flavors and Flavorings
Natural Pork Flavoring
Natural Beef Flavoring
Natural Chicken Flavoring
Soy Sauce
Soy Protein Isolate
Soy Protein
Bouillon
Stock Broth
Malt Extract
Malt Flavoring
Barley Malt
Anything Enzyme Modified
Carrageenan
Maltodextrin
Pectin
Protease
Corn Starch
Citric Acid
Powdered Milk
Anything Protein Fortified
Anything Ultra-Pasteurized  

So if you do eat processed foods, please remember to be on the lookout for these many hidden names for MSG.

Choosing to be MSG-Free

Making a decision to avoid MSG in your diet as much as possible is a wise choice for nearly everyone. Admittedly, it does take a bit more planning and time in the kitchen to prepare food at home, using fresh, locally grown ingredients. But knowing that your food is pure and free of toxic additives like MSG will make it well worth it. Plus, choosing whole foods will ultimately give you better flavor and more health value than any MSG-laden processed food you could buy at your supermarket.

Monday, 14 November 2016

Letter from The Countess of Mar to Lord Hall and MEGA Statement from TYMES Trust


The Countess of Mar sent the letter below to Lord Hall (Tony Hall, Director of the BBC).

It is now over a week and she has not had the courtesy of even an acknowledgement from Tony Hall (although he commented on the death of Leonard Cohen, who died on 7th November 2016, so he has been available, yet he has not replied to a fellow Cross-Bencher in the House of Lords).

The Lord Hall of Birkenhead CBE
Director General
Editor-in-Chief
The BBC
Broadcasting House
Portland Place
London
W1A  1AA

Also sent by email:  tony.hall@bbc.co.uk

3rd November 2016

Dear Lord Hall

Formal Complaint to the BBC   re: the purveying of mis-information on 1st November 2016

This is brought to your personal attention because it is such a serious matter.

The BBC is required to be accurate and impartial, but James Gallagher (the BBC News website Health and Science reporter who was responsible for the item that made the BBC headlines from 5.30am on 1st November 2016) was neither accurate nor impartial.

On BBC News 24 the breaking news ticker headline repeatedly announced across the screen: “A successful treatment for children with CFS is being trialled by the NHS." 

The BBC’s Charter says that its primary function is to inform, educate and entertain, but the BBC breached its own Charter by its 24-hour non-stop promotion of a study of myalgic encephalomyelitis/chronic fatigue syndrome in children and adolescents (the £1 million FITNET trial, which stands for Fatigue In Teenagers on the interNET) and which claims success for a behavioural modification intervention when there is no objective evidence of any such success in either children, adolescents or adults. Moreover, the study had not even started to recruit participants: this was not made clear and it was heralded as “Landmark chronic fatigue trial could cure two-thirds" but that was later changed to the nonsensical "Landmark chronic fatigue trial could treat two-thirds". Chronic fatigue is not the same as ME/CFS. 

The item was described thus: “the BBC and their scientifically illiterate journalists imaginatively and dishonestly spun this as a 2/3 cure rate”.


Specific aspects of the complaint

1.            Professor Esther Crawley is currently under investigation by the GMC for negligent management of a young person with the condition in which she alleges to be an expert, this management being exactly the same as that which is to be used in her FITNET study so strongly promoted by the BBC.  Had the BBC’s journalist done his homework, it would surely have tempered his overly enthusiastic support for Professor Crawley.

2.            Throughout the day, the BBC reporters did not place the issue in proper context:  there was no mention of the discredited PACE trial of CBT/GET in adults: in 2011, it was hailed by the Science Media Centre and hence the UK media as successful, but following a five-year quest to obtain the raw data for re-analysis by independent statisticians, when the Judge ordered the raw data to be released, it was found to be fraudulent and that instead of the claimed recovery figure of 22% after CBT and GET, the actual figures were only 7% for CBT and 4% for GET, meaning that there was a null result from the PACE trial.

3.            The reporting was inaccurate (66% of participants were said to be “cured”) because it grossly exaggerated and mis-represented the findings of a  small Dutch study in young people upon which the FITNET trial relies as evidence of efficacy: whilst there was a significant difference in school attendance at six months in those who received internet CBT versus those who received “usual care” (75% vs 16%), the ultimate findings of the Dutch study showed no difference between the groups at 2-year follow-up. The BBC reporter failed in his duty to mention the actual results of the Dutch study, which was that children who did not get any CBT did as well as those who did get CBT, nor did he mention that three of the four thresholds used in the Dutch trial for “recovery” were virtually the same as for the entry criteria into the trial, nor that two of the Principal Investigators of the PACE trial (Professors White and Chalder) commented that in the Dutch study, most children met the trial criteria for “recovery” when they entered the trial  -- a comment not without irony, as exactly the same situation occurred in their own PACE trial of CBT/GET in adults.

4.            Undue credence was given to the behavioural theory of ME/CFS even though that theory has long since been debunked throughout the international medical community.

5.            The interview with Professor Crawley at 8.15 am on the BBC Today programme was heavily biased towards her own views, with very little time given to the opposing views of Jane Colby, Executive Director of TYMES Trust (The Young ME Sufferers Trust, the longest established national UK service for children and young people with ME and their families and winner of the Queen’s Award for Voluntary Service), so the BBC clearly did not present a balanced view.

6.            There was a further lack of balance in that no medical expert who disagreed with Professor Crawley was interviewed – even the Medical Advisor to the ME Association was not informed that this item was to be broadcast and was excluded from participation.

7.            Based on the extensive biomedical evidence, the FITNET trial cannot offer hope or promise of recovery and to broadcast that it can is in breach of numerous medical codes of conduct and to mislead patients by promising a cure when there is no such certainty is in breach of the General Medical Council Regulations as set out in “Good Medical Practice” (2006):

       “Providing and publishing information about your services – paragraphs 60-62

             60.   If you publish information about your medical services, you must make sure the information is factual and verifiable
             61.  You must not make unjustifiable claims about the quality or outcomes of your services in any information you provide to patients.  It must not offer guarantees of cures”.

Although this is an issue for the GMC and not primarily for the BBC, nonetheless the BBC gave undue prominence to unproven interventions and incorrectly reported the trial as curative.                 
 
8.            Given the insistence of the psychosocial school that ME/CFS is a behavioural disorder, this FITNET trial is likely to become another weapon to force children with ME/CFS to undergo interventions which can make them even more sick and its extensive roll-out throughout the NHS may be used as a vehicle for the forcible removal of children from their parents and home, a situation that is already rampant in the UK.

9.            The BBC coverage was so hyperbolic and it afforded the FITNET trial so much publicity that it was clearly organised as a counter-punch to the anti-PACE evidence which is now gaining world-wide attention.

10.          Many international medical scientists and clinicians with whom I am in contact who are involved with the biomedical pathology of ME/CFS (including not only those in the UK but those in Canada, the US, Scandinavia, Holland, Australia and New Zealand) are appalled at such unjustified and uncritical publicity afforded by the BBC to a study which is based upon speculation, not upon science.


For the avoidance of doubt, I have provided background information.


Background to the complaint

It seems that the BBC relies on briefings provided by the Science Media Centre (SMC) without bothering to verify the facts. Such lazy reporting is unacceptable because it is misleading and is harmful to the public.  The Science Media Centre began work in 2002 to operate like a newsroom for national and local media when science stories hit the headlines. It is funded by, amongst others, the pharmaceutical and chemical industries.  The SMC’s covert purpose is to ensure that journalists and the media report scientific and medical matters only in a way that conforms to Government and industry’s “policy” on the issues in question. To that end, the SMC provides “training days” for journalists so that what they report on scientific and medical issues is effectively influenced and controlled by the SMC. Its founder member is psychiatrist Professor Sir Simon Wessely, whose life’s work consists of asserting that ME/CFS is not an organic but a behavioural disorder that can be cured by “cognitive restructuring” and graded aerobic exercise (ie. the interventions to be used in the FITNET study).

The BBC’s science editor David Shukman’s unqualified support for the SMC is a matter of national concern because it is to the serious detriment of very sick people: for many years the SMC has campaigned tirelessly against people with ME/CFS and is internationally discredited because of its well-documented and indisputable bias (The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction: Professor Malcolm Hooper, September 2013).

Not for the first time, the BBC has reported as fact what was an outright untruth about ME/CFS, for example, its Science Correspondent Tom Feilden’s overly excited introduction to his interview with Professor Wessely about ME/CFS on the BBC’s Today programme on 29th July 2011 exemplified a failure to exercise the requisite journalistic neutrality when reporting a “story”. Feilden won the UK Press Gazette’s first ever specialist science writing award for breaking the story the SMC gave him about the alleged harassment and intimidation of researchers working on CFS/ME.  The SMC had nominated him for the award, but Feilden’s “story” of threats and harassment from ME/CFS activists was found to have been orchestrated and promoted by the SMC and in October 2016 was dismissed by the Judge at the First Tier Tribunal as “without foundation” and “wild speculations”.

It is disquieting that James Gallagher is in fact a member of the SMC’s Advisory Panel (http://www.sciencemediacentre.org/about-us/governance/), so he had an undeclared conflict of interest.

He was clearly promoting the SMC’s agenda and his story was nothing more than an unwarranted advertising campaign for Professor Esther Crawley’s FITNET study of behavioural interventions in children and adolescents with ME/CFS.

It is not surprising that the “experts” put forward by the SMC to support the news item were Professor Esther Crawley herself, her close friend Professor Stephen Holgate, and Professor Paul McCrone (who was involved with the now-discredited PACE trial of CBT/GET in adults), all of whom are known to be biased in favour of the SMC’s agenda. Professor Holgate referred to Professor Crawley’s FITNET trial as “high quality research”, but one senior UK Consultant Physician who specialises in the multi-systemic pathology of ME/CFS asks how a study that is carried out on Skype and which does not even meet the patients face-to-face, let alone examine them over time, can be described as “high quality research”.

The FITNET trial was due to have started in May 2016, but it seems that it could not secure enough volunteers, so a media-hype was necessary; as customary with the SMC’s tactics, this was orchestrated to overshadow the evidence of serious biomedical pathology presented at the International Association for CFS/ME conference in Fort Lauderdale held at the end of October 2016 (evidence which the SMC chose to ignore) https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1611a&L=co-cure&F=&S=&P=9740 .


I ask that you ensure that the BBC issues a prominent retraction of its endorsement of and support for the FITNET study and, to counter-balance its support for behavioural interventions for a proven and classified neuroimmune disorder, the BBC offers a commensurate right of reply to those with an understanding of the biomedical nature of the disease.


The Countess of Mar


MEGA STATEMENT FROM TYMES TRUST : A STUDY TOO FAR


Let us establish at the start, that Tymes Trust does not endorse or support MEGA.

What disease does this study purport to study? Does it even study ME? The criteria are so wide, there will be various forms of fatiguing illnesses in this study which do not, in real life (epidemiology) exhibit the classic signs and symptoms of ME (Myalgic Encephalomyelitis). What will that tell researchers about ME? In our view, given the loose selection criteria, the term ME should have been omitted entirely from the study before asking the public - through a petition, of all things - to endorse it. Fatigue is not ME, and ME is not fatigue. This can be determined merely through reading Ramsay's original ME definition and comparing it with the woolly MEGA criteria. What sort of science is it that does not remain true to the definition of the disease that describes so accurately how it affects patients?

Next, what about those we are asked to put our trust in to conduct this study? It has been observed by others that the list includes people who were involved with the PACE trial. The PACE investigators were responsible for a quarter of a million pounds of taxpayers' money being spent to hide the data for five years from both patients and scientists. When, finally, an appeal tribunal Judge ruled against them, and ordered them to release the data, it was found on independent analysis that the claimed results had been wildly exaggerated. The resulting press coverage touting the bogus success of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for people with ME was therefore also wildly exaggerated.

Then there is the infamous CFS/ME NICE Guideline, recommending CBT and GET. One of those involved in producing the NICE recommendations, and now involved in MEGA, is attempting to subject children to GET, and to online CBT (which the protocol reveals leads to a form of GET) through the MAGENTA and FITNET trials. The potential damage to children with classic ME who might thereby undertake GET has horrified many parents and ME organisations alike, given the evidence that now exists for physical deterioration after exercise.

FITNET was recently covered by the media. The study on which it is based showed a nil result on follow-up. Yet we were led to believe that a two thirds cure rate could be hoped for from the new trial by this MEGA researcher. Our Executive Director, Jane Colby, explained our concerns on a current affairs programme, the BBC's Victoria Derbyshire Show.

From The Victoria Derbyshire Show

Victoria: Jane, you don't like this idea of CBT treatment. Why is that?

Jane: Well, I don't think it's as simple as that. I think it's the fact that somebody has got a serious physical illness. We deal with children - and I've been there myself too as a result of a virus related to polio - who are completely bedridden and may be unable, hardly, to eat, or move, or have to be even tube-fed, seriously ill people - and if you give people like that some kind of CBT which encourages them to feel that their illness belief is wrong, which tends to happen with a number of people who deliver CBT, you encourage them to do too much. As a result of this, they will actually crash and they will actually get a lot worse.

We deal with children who are basically suffering from Myalgic Encephalomyelitis, and ME was originally defined as an illness where making a lot of effort, or even just a little bit of effort, would make you a lot worse. It also was defined as being very variable during the day, with an alarming tendency to become chronic. And all that has been backed up by the American Institute of Medicine recently. And I think people who have got these classic cases of very severe ME are different from people who have other types of fatiguing illness, and the chronic fatigue umbrella is pulling in people with this classic ME illness, which is NOT a mixture of illnesses. But Chronic Fatigue Syndrome IS a mixture of illnesses. The term is “heterogeneous”, and we know it's heterogeneous, so you have to be very careful what you're doing with your patient selection, otherwise you are going to give the wrong sort of treatment.

Jane was asked her views on the researcher's promotion of this treatment UK-wide:

Jane: If these children and their parents are pretty much told that this is probably going to help, and then it doesn't help, they're very often not believed. Now what we see happening a lot, unfortunately, is that when this doesn't improve the child's condition, then the parents get accused of making the child ill, or the child is made to feel it's their own fault and they've got some kind of psychiatric condition.

Victoria: You feel very passionately about that – the sort of not being believed about what's causing it.

Jane: Well, the reason is that it leads to these erroneous false allegations of child abuse against the parents. We've seen 151 cases of this, and had to help them, and not one of them has been proved to be child abuse. Now this happens when some kind of psychological treatment is given and it doesn't work. If it doesn't work, then the parents and the child must be believed.

Jane was also asked for a comment on the BBC's Today Programme:

Jane: I think if you use a psychological treatment to try to help people reduce anxiety and worry, that is one thing. If you try to use it to persuade people that they have a wrong belief when they say they are physically ill, you end up encouraging them to do enough to make themselves much worse, and there is plenty of evidence for that. And people are sick of experts who think they know better than they know their own children. They know what makes their children worse.

Apart from this misleading impression painted by some of the MEGA researchers that ME (which they persistently mix with chronic fatigue) can be cured by psychological means, it must also be remembered that the public's opinion of people with ME has been tarnished by several of those involved in MEGA. This has been a smear campaign, spread by these researchers, and launched to the press through the medium of the UK CMRC Research Collaborative. The accusations against patients, since repudiated in the PACE tribunal appeal Judgement, were also spread directly to Parliament through the Collaborative. We refer you to our newly retitled Report, which is now on our website and contains a quote from the PACE tribunal appeal Judgement.

Shining A Light On The CMRC Setup (Minutes And Emails Obtained Under FOI)

This Report from Tymes Trust never ceases to shock. It is the shameful inside story of the UK CFS/ME Research Collaborative. Our Report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants. We think this is key reading for the ME community, now in particular because of the involvement of these people in MEGA.

In conclusion, we find it difficult to credit that any supposed “ME” organisation would be happy to work alongside these same researchers on anything, much less on a trial that does not even study ME per se and which will be the recipient of yet more millions of public money.

ENDS


Thursday, 10 November 2016

The eternal God is thy refuge


C H Spurgeon’s Morning Devotional for 10th November

"The eternal God is thy refuge.”

Deuteronomy 33:27

The word refuge may be translated "mansion," or "abiding-place," which gives the thought that God is our abode, our home. There is a fulness and sweetness in the metaphor, for dear to our hearts is our home, although it be the humblest cottage, or the scantiest garret; and dearer far is our blessed God, in whom we live, and move, and have our being. It is at home that we feel safe: we shut the world out and dwell in quiet security. So when we are with our God we "fear no evil." He is our shelter and retreat, our abiding refuge. At home, we take our rest; it is there we find repose after the fatigue and toil of the day. And so our hearts find rest in God, when, wearied with life's conflict, we turn to Him, and our soul dwells at ease. At home, also, we let our hearts loose; we are not afraid of being misunderstood, nor of our words being misconstrued. So when we are with God we can commune freely with Him, laying open all our hidden desires; for if the "secret of the Lord is with them that fear Him," the secrets of them that fear Him ought to be, and must be, with their Lord. Home, too, is the place of our truest and purest happiness: and it is in God that our hearts find their deepest delight. We have joy in Him which far surpasses all other joy. It is also for home that we work and labour. The thought of it gives strength to bear the daily burden, and quickens the fingers to perform the task; and in this sense we may also say that God is our home. Love to Him strengthens us. We think of Him in the person of His dear Son; and a glimpse of the suffering face of the Redeemer constrains us to labour in His cause. We feel that we must work, for we have brethren yet to be saved, and we have our Father's heart to make glad by bringing home His wandering sons; we would fill with holy mirth the sacred family among whom we dwell. Happy are those who have thus the God of Jacob for their refuge!


Wednesday, 2 November 2016

PACE part II? Esther Crawley and FITNET



In case you missed it, unlikely but kudos if so, today (1 November) has seen considerable media coverage of the proposed FITNET trial [1] (of course the acronym has to include the word ‘fit’) being run by Professor Esther Crawley. Costing £1 million, we yet again see large sums of money being spent on studies promoting the biopsychosocial (BPS) model of the disease rather than decent biomedical research. Crawley’s trial draws on a Dutch study which showed no difference between treatment cohorts at long term follow up [2], though the BBC and their scientifically illiterate journalists imaginatively and dishonestly spun this as a 2/3rd cure rate. Again the laziness and uncritical reporting of any story concerning ME, promoted as usual by the Science Media Centre (SMC), by the UK media is glaring. They even dragged out their old canard, supposed victimisation of the brave researcher (that would be Crawley) by nasty ME activists, said researcher ‘heroically’ carrying on despite abuse from a minority of patients. Such claims were conclusively debunked by the recent First-Tier tribunal Judgement [3], which ordered the release of the PACE trial data but apparently no one told the BBC.

Today’s coverage of FITNET cannot be treated in isolation and should be compared with earlier reporting of the PACE trial by the British media, which was unfailingly enthusiastic, one-sided and uncritical. Both trials have been strongly promoted by the SMC, whose press releases are repeated more or less verbatim by the media, without any attempt to investigate the accuracy of their claims. This is possible in today’s media due to a combination of laziness, establishment cronyism and a lack of scientific understanding amongst journalists reporting on these issues. The extensive coverage of studies promoting the BPS model of ME is in stark contrast to the virtual non-reporting of any biomedical research. The failure of the media to cover the recent dismantling of PACE, extensively covered elsewhere but barely mentioned in the UK press, was particularly revealing. One would think there was a media blackout, with such coverage as there was focused more on defending the PACE researchers than exposing their fraudulent study.

Had the media noted the flaws in PACE and the reasoning that underlines such studies so they might have been able to interrogate Crawley regarding the potential flaws in her study. The fact that the participants in the FITNET study will be children, makes it more morally questionable, though her focus on fatigue as the primary symptom suggests many trial subjects probably won’t have ME, as was the case with PACE. No doubt this will flatter her results if/when they are published, not always guaranteed with Crawley as demonstrated by the SMILE trial [4].

It was inevitable the exponents of the BPS model would push back, ably abetted by the SMC, given the recent disaster that was PACE. The timing seems convenient given the IACFS/ME conference that recently ended in Florida, revealing promising biomedical studies [5] which you’ll have no hope of reading about in the British media. I find professor Stephen Holgate’s comments about FITNET, in which he promoted the study as an example of ‘high quality research’ particularly concerning for two reasons:

1. Crawley’s study is the converse of quality research CBT has yet to cure anyone suffering from a debilitating neurological disease

2. Both Holgate and Crawley* are involved in the proposed MEGA study, given their views this does not instil me with confidence regarding how this study will be conducted

Those promoting the MEGA study [6], including several ME charities, are encouraging patients to sign a petition in its support, an unprecedented action in the field of scientific research and arguably unethical. To expect ME patients to put their trust in a study involving Crawley in such a powerful role is, in my opinion, expecting too much, whatever the quality of the other researchers involved. Especially as those new to the field of ME are likely to put their trust in researchers with the most experience in the discipline, lacking the knowledge of just how flawed that experience is with its strong bias towards the psychological model of the disease. Considering these circumstances, I would encourage people to consider signing the OMEGA petition opposing MEGA [7] instead and direct their energies towards gaining funding for high quality ME research, an increasing amount of which is taking place, especially outside the UK.

One final point about today’s coverage of the FITNET trial and the free publicity professor Crawley has received to promote her controversial views. Dr Charles Shepherd, Medical Adviser to the ME Association, was apparently unaware this issue was going to be covered by the media, claiming complete ignorance [8]. This is unacceptable. Our charities should be taking the lead in responding to such harmful propaganda**, as would be the case with any other disease, and their absence ‘missing in action’ on such an occasion, leaving us exposed to this reporting, is letting down the ME sufferers they are meant to be representing to an unforgivable degree.

Postcript.

Since writing this piece it has been brought to my attention that James Gallagher, the BBC’s Health Editor who so enthusiastically promoted FITNET, is on the advisory committee of the Science Media Centre that controlled today’s coverage (and pretty much all media reporting relating to ME). I don’t remember his pointing out this potential conflict of interest and I shall be making a formal complaint to the BBC (thanks to Jamie Sugg for bringing this to my attention).


*Needless to say the BBC failed to point out Holgate’s link to Crawley when reporting his comments

**Some charities are more culpable than others and I would exclude Tymes Trust from this description and recommend children suffering from ME to visit them for information about the disease (please avoid AYME)












Following yesterday's impressive media hijack by the Science Media Centre (there was no actual story; it was simply manufactured for the occasion, complete with misleading reference to the counterpart Dutch study), the total absence of a coherent media infrastructure within the UK's ME patient community became - yet again - painfully obvious. Alongside the urgent need to ramp up lobbying for an expedited review of the NICE Guidelines (in light of recent research developments outside the UK), this is arguably the most yawning gap within ME advocacy and requires immediate attention if this pattern of events is ever going to change (as anyone familiar with the last 60 years of our history will know).

There is little that individual patient advocates, bloggers or small groups can do to address this media imbalance; the only possible solution is to engage external expert, high-level professional advice and assistance to initiate a rapid, comprehensive media strategy. However, this could only be obtained via a broad coalition of the ME charities and groups who purport to represent the interests of patients. My attempts to negotiate that (as with the NICE Guidelines review) have yielded no results so far - and I think it's unlikely that they ever will.

I have been writing about this media lacuna for some time now. For example, in January 2015, I wrote this in a blog post:

"The complete absence of a visible patient narrative became painfully evident last week. The mainstream British media’s wilfully ignorant coverage of ME patients’ perceived “fear of exercise” gave the headline writers a field day (examples here and here). Journalists appear to have regurgitated mindlessly a press release from the Science Media Centre’s relentless propaganda machine and failed to make any responsible enquiry into the real story. Subsequent rebuttals from the charities limped in on the back foot; positive and corrective commentary was drowned out in the general furore; patients and supporters rallied but we were all too late to the party.

Why? How could this happen yet again? Because it can. Because that real story – patients’ actual lived experience – is invisible and therefore not officially documented. Accounts of individual patients’ experiences appear occasionally (usually in local media or the comment/blog sections of national media) but their impact is relatively low and they may even serve to normalise – rather than flag up the scandal of – the way in which the condition is treated and portrayed. Chronically sick ME patients are not up to the Herculean task of funding and managing a long overdue strategic initiative to disseminate our real story pro-actively and deflect negative publicity effectively. But without such a campaign in place, it will happen again; we will remain without a platform from which either to speak or to generate our own record for the archives.

Do media stories really matter? Yes, of course they do – because those stories are subsumed into the source materials which constitute our collective history. If there can be no aggregation of fair and accurate records, then history is falsely written and becomes a mere propaganda tool."