Wednesday, 18 October 2017

Trial By Error: Another Letter to NICE’s Sir Andrew Dillon


17 October 2017

By David Tuller, DrPH

First, for those who might have missed it, here’s a conversation from This Week in Virology (TWiV), posted a few days ago. Dr. Racaniello and I discuss the CDC, NICE, Esther Crawley’s ethically challenged behavior, the CMRC, and other stuff.

Second, earlier today, I sent the following e-mail to Sir Andrew Dillon, the NICE chief executive:

Dear Sir Andrew:

I would like to congratulate NICE on its decision to pursue a full update of CG53, the CFS/ME guidance, rather than accept the surveillance report’s recommendation to leave it as is. The Guidance Executive made the right call, based on the current science—and given the international controversy over PACE trial and other CBT/GET trials. In NICE’s announcement, the list of concerns about the 2007 guidance was a fair accounting of what has troubled people for years and led to the outpouring of stakeholder comments opposed to the initial recommendation.

The decision to pursue a full update leaves some unanswered questions. Given that the new guidance might not be available until 2020, I am hoping you or someone else at NICE can shed light on these issues. The first involves the official status of the current guidance. The second involves references to CFS/ME elsewhere within NICE that do not appear to be aligned with the decision to fully update the guidance.

1) What is the official status now of CG53? Is it considered “provisional” or on stand-by in some way? Or does it remain fully in force? In other words, if National Health Service clinics and doctors claim to be following the “NICE guidance” for CFS/ME, do they also have an obligation to inform patients that the current version has been deemed no longer fit for purpose and is undergoing a “full update”? If these clinics and doctors prescribe CBT and/or GET, citing NICE as evidence and support, do they now have an obligation to explain that the effectiveness of these two treatments is under serious question?

2) The decision to pursue a “full update” suggests that NICE has joined the international scientific community in questioning whether psychological and behavioral approaches are appropriate for this illness—especially given the extensive evidence of physiological dysfunction. Does that mean NICE will reconsider other references to CFS/ME in agency documents? So far, patients and advocates have noted two sets of references to CFS/ME that do not appear to reflect the updated NICE position on CG53 and the illness itself.

One involves a NICE initiative called Improving Access to Psychological Therapies. According to the IAPT site, NICE is working with NHS England on the program. IAPT is designed to “assess digitally enabled therapies for anxiety, depression and medically unexplained symptoms which offer the potential to expand these services further.”

Chronic fatigue syndrome is included in the list of thirteen conditions identified by “the NICE expert IAPT panel” as appropriate targets for interventions developed through this program. The IAPT site indicates that these interventions need to be consistent with NICE guidance. The site then refers readers to CG53 but makes no mention that this guidance is undergoing a full update.

Why is chronic fatigue syndrome still listed under the IAPT program? Does the Guidance Executive agree that it should be removed, since it is not a psychological or psychiatric disorder and the use of CBT and GET is very much under question? If it is not removed from under the auspices of IAPT, does that mean NICE intends to encourage the development of digital methods of delivering CBT and GET to people with CFS/ME, even as the guidance itself undergoes a full update?

Is the Guidance Executive aware that inclusion of CFS/ME in the IAPT program creates enormous concern among patients and advocates specifically because it suggests NICE might adopt or endorse some version of FITNET-NHS? That is the trial in which Professor Esther Crawley is examining the delivery of online CBT to children, based on the purported success of earlier Dutch research. Is the Guidance Executive aware that, as with the PACE trial, critics (including me) have documented serious methodological flaws in both the Dutch FITNET study and Professor Crawley’s own work in this field?

A second set of references to chronic fatigue syndrome is in a recent draft guideline on “suspected neurological conditions”—essentially, a primer on the symptoms and signs that might indicate a neurological condition and trigger a referral to specialist care. NICE published the draft in August and sought stakeholder comments. In its stakeholder submission, Forward ME noted that the draft guideline includes several unfortunate references to chronic fatigue syndrome as being a “functional” symptom or disorder.

As the draft guideline itself explains: “Functional symptoms are complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. They may mimic neurological disorders.” The draft guideline suggests, for example, that “concentration difficulties” do not warrant referral to a neurologist if these difficulties are “associated with chronic fatigue syndrome or fibromyalgia.”

Psychiatrists and other adherents of the biopsychosocial field have long classified chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and other conditions involving so-called “medically unexplained symptoms” as functional somatic syndromes or disorders. Given the current effort to revamp the CFS/ME guidance and the significant evidence of actual physiological dysfunctions, does NICE feel comfortable at this point describing the illness elsewhere as a “functional” symptom that is “not primarily” organic in nature but is “likely to have an emotional basis”?

Thank you, Sir Andrew. I look forward to your response. –

Best–David


Tuesday, 17 October 2017

He shall gather the lambs with His arm


C H Spurgeon's Evening Devotional for 17th October 

“He shall gather the lambs with His arm."

Isaiah 40:11

Our good Shepherd has in His flock a variety of experiences, some are strong in the Lord, and others are weak in faith, but He is impartial in His care for all His sheep, and the weakest lamb is as dear to Him as the most advanced of the flock. Lambs are wont to lag behind, prone to wander, and apt to grow weary, but from all the danger of these infirmities the Shepherd protects them with His arm of power. He finds new-born souls, like young lambs, ready to perish-He nourishes them till life becomes vigorous; He finds weak minds ready to faint and die-He consoles them and renews their strength. All the little ones He gathers, for it is not the will of our heavenly Father that one of them should perish. What a quick eye He must have to see them all! What a tender heart to care for them all! What a far- reaching and potent arm, to gather them all! In His lifetime on earth He was a great gatherer of the weaker sort, and now that He dwells in heaven, His loving heart yearns towards the meek and contrite, the timid and feeble, the fearful and fainting here below. How gently did He gather me to Himself, to His truth, to His blood, to His love, to His church! With what effectual grace did He compel me to come to Himself! Since my first conversion, how frequently has He restored me from my wanderings, and once again folded me within the circle of His everlasting arm! The best of all is, that He does it all Himself personally, not delegating the task of love, but condescending Himself to rescue and preserve His most unworthy servant. How shall I love Him enough or serve Him worthily? I would fain make His name great unto the ends of the earth, but what can my feebleness do for Him? Great Shepherd, add to Thy mercies this one other, a heart to love Thee more truly as I ought.


Tuesday, 3 October 2017

UK ME/CFS Biobank team receives largest ever grant to continue biomedical research project


Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research project

By Russell Fleming, Content Manager, ME Association.

ME Association trustees and staff were over the moon when we heard that the CureME team at the London School of Hygiene and Tropical Medicine had received a new grant of $2.1 million from the National Institutes of Health (NIH) in America.

The funding represents the biggest ever single investment in biomedical research to happen in the UK and it will enable a current project, that is searching for disease biomarkers, to be extended for another 4 years – until 2021.

The project is a longitudinal study that is measuring changes in the immune system and genetic profile of individuals in a disease whose symptoms are known to fluctuate over time. The initial £1 million project, which began in 2013, was over 3 years and had also been made possible by funding from NIH.

Dr Luis Nacul, who leads the CureME team, is also responsible for overseeing the UK ME/CFS Biobank, which has been built and maintained by charity support and the funding from America.

The new grant will enable the Biobank to increase in size as even more blood samples and clinical data will be collected from people with ME/CFS, multiple sclerosis, and healthy controls, and then made available to research applicants.

“The new grant from the NIH (US) will enable, for the first time, comprehensive prospective assessments of cases of ME/CFS at regular intervals.
“This greatly enhances the chances of a breakthrough in the understanding of the pathophysiology of this complex disease and the identification of much-needed biomarkers for the diagnosis of different sub-groups of patients.
“We very much look forward to continuing our partnership with the patient community, which has been key to the success of our research so far.” 
Dr Luis Nacul, Principle Investigator, CureME team, LSHTM.

The Biobank is the only resource in the world able to include samples from those most severely affected – the house- or bed-bound – and is the premier resource outside the United States for the study of the disease. All participants are examined by a clinician and must conform to the Biobank’s rigorous protocols.

The ME Association has been a long-time supporter of the Biobank and provides funding to support its development. This longitudinal project, that in total will amount to some £2.56 million, represents one of the most exciting opportunities to learn more about this devastating disease.

Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, and Chair of the UK ME/CFS Biobank Steering Group, commented:

“This is a significant and vital sum of money that will help scientists unravel the mysteries of this devastating illness. 
“The irony is that the funding comes once again from America.
“What this seems to suggest is that the USA is far more serious about finding the underlying causes of M.E., while the UK seems most willing to invest in inappropriate studies using cognitive behavioural therapy and graded exercise.
“The fact that the NIH has decided to provide another major grant is an important endorsement of the ME/CFS Biobank, and we would like to congratulate all the staff who have been involved in setting up and developing what has become a vital new part of biomedical research infrastructure here in the UK.
“We hope that other research groups will also now start to make use of this unique resource to achieve desperately-needed breakthroughs into the cause and treatment of ME/CFS.” 
Dr Charles Shepherd, Hon. Medical Adviser, ME Association,Chair of the UK ME/CFS Biobank Steering Committee.

Research: A longitudinal immunological study for ME/CFS biomarker discovery

What are the UK ME/CFS Biobank team proposing to do with this funding?

  • They will be studying 110 ME/CFS cases (half severe, half mild-moderate) meeting all of the CDC, Canadian Consensus, and Institute of Medicine, criteria.
  • They will focus on detailed immunological and clinical phenotypes (subgrouping patients by immune differences, such as the number of different immune cells and cytokines, and clinical differences, such as severity).
  • Analyse inter-relationships (the relationship between the immune differences and differences in severity/symptoms and changes over time).
  • Cases will be assessed every 6-12 months, over 5 time points, to record changes in biomarker expression and link these to clinical parameters (whether their condition has gotten better, worse or remained stable) in order to analyse biomarkers at different stages of disease progression and try to identify subgroups.
  • Cases will be grouped according to trends in symptom severity using scores relating to pain, fatigue and functional status.
  • In-depth Immunological Profiling (to try and identify biomarkers) will involve:
* Phenotyping Lymphocytes (T cells, B cells and NK cells) and monocytes from the blood samples.
* Measuring the functional response of NK (natural killer) and T cells after stimulation (by a virus, for example).
* Analysing secreted cytokines from the stimulated NK and T cells.
* Genotyping the donors for MHC class 1 (molecules that trigger an immune response to a specific toxin or foreign substance) and KIR (recognise MHC class 1 cells and activates the killing response of NK cells).

  • They then want to determine whether changes in immune parameters come before, after or predict the changes observed in clinical presentation (changes in symptoms and severity over time).
  • This will be done by quantifying correlations between immunological biomarkers and by identifying biomarkers associated with changes in ME/CFS clinical status.
 Significance of the study

“This study is unique for its strict inclusion criteria and detailed clinical phenotyping, adding specificity and validity to our analysis.”

“This is, to our knowledge, the first long-term prospective study of ME/CFS to incorporate both ambulatory and severe cases and to include comprehensive clinical data and in-depth immunological profiling.”

“This research will contribute to the development of better diagnostic tools and treatments.”

“The inclusion of severe cases through home visits will allow for research on a subset of patients often neglected in ME/CFS studies.”

“Because 1- 2.5 million Americans have ME/CFS, this study has the potential to improve the lives of a large patient population in the U.S. as well as advance the state of the field in the U.S. and internationally.”

“Patients and stakeholders are involved in all aspects of the research.”

More study information, here.

More Reaction

“This is great news for quality research into ME/CFS. The Biobank team has always put the needs of the patient first and it’s fantastic that their good work can now continue”

Cecilia Finnerty, Patient Representative.

“Such wonderful news for people with ME.  It is a privilege to serve on the Steering Committee alongside a committed professional team who have such a heart for people with this illness.”

Hannah Clifton, Director, The ME Trust. 

“ME Research UK is delighted that the team has been awarded a new grant from the NIH worth $2.1m. The funding will enable further research on those affected by ME/CFS over the next 4 years and will ensure that the UK’s first biobank of human blood samples continues to be a valuable resource for all researchers in the UK and beyond.”

Sue Waddle, Vice-Chair, ME Research UK.

“Congratulations to the London School of Hygiene & Tropical Medicine team for their grant award from the NIH. This is the most important development in UK research into ME this year and all the more so because it shows the international standing of the group. Very well deserved.”

Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, University College London

Monday, 2 October 2017

Individual Community Symposium talks available on the Open Medicine Foundation (OMF) YouTube Channel


The individual talks from August’s Community Symposium on the Molecular Basis of ME/CFS are now available as separate videos in a playlist on OMF’s YouTube channel.

Have a look to check out the speakers you are interested in hearing from, or the panel discussions where they answer questions from our worldwide audience.

The DVDs will be available soon and can still be ordered here.

Visit our website to learn more about the Symposium and OMF’s research.

From the OMF YouTube channel playlist –

The Community Symposium on the Molecular Basis of ME/CFS, sponsored by OMF, took place on August 12, 2017 at Stanford University. It brought together hundreds of researchers, clinicians, patients, caregivers, families, and advocates, and thousands more by livestream.

For more about the symposium, check out the following summaries:

To support ME/CFS research, please donate today: 


Monday, 25 September 2017

The SMILE Trial and Its Not-So-Happy Aftermath and Mutiny by ME sufferers forces a climbdown on exercise treatment

The SMILE Trial and Its Not-So-Happy Aftermath

http://www.investinme.org/IIMER-Statement-1709-01.shtml

A statement from Invest in ME Research

Invest in ME Research has never approved of the Lightning Process (LP) business and its model of operation where former 'recovered' patients pay a lot of money to become practitioners of this Trade Mark training programme.

We view this as a pyramid business – unregulated, unaccountable and unscientific.

Claims that it cures people with ME we find as risible hype.

Since 2010, we have made objections about the SMILE Trial [1] – an abhorrence in this age when we should be investing in biomedical research into ME in order to find causes for this disease.

Instead, funding is allocated to a commercial business enterprise to test it out on children.

It is shameful that any self-respecting researcher would participate in this.

It is disgraceful that any media outlet with any integrity would just take the press release of a media centre which is known for promoting a false view of ME and then avoid doing even the most basic of journalistic tasks – such as research of the information.

It is especially disgusting to witness the hypocrisy of some organisations who now complain about this training programme - yet all the while seem to be happy to sit in the same “big tent” along with the SMILE Trial PI, in a so-called collaborative organisation which continues to support this sea of research dross.

What a sickening spectacle! Any ME charity or researcher promoting this training programme, or working with the people that carry out this research, is doing a great disservice to ME patients.

On the day after what would have been the 40th birthday of a young woman, whose life was taken far too early by this disease, instead of remembering her ordeal we are, instead, treated to another media blitz from biased editors covering more junk research.  

The lemming-like media in the UK perform their usual subservient role and unhesitatingly follow the propaganda issued by the Science Media Centre (SMC) and continue their usual discrimination against people with ME and their families.

Not for the UK media any rational analysis of why people with ME are frustrated for a generation by mindless junk research or by disingenuous spokespeople claiming to represent them.

Instead the media trot out the same lies about death-threats against researchers (normally only two) - yet ignore the plain fact that patient-funded research is thriving with researchers clearly enthused about the possibilities of finding the real cause(s) of this disease.

What the media should really look at is the IIMEC11 pre-conference dinner presentation by Kjersti Krisner [2].

This clearly shows what harm ignorance about ME can be done when vested interests manipulate and distort the true nature of this disease.

Then the media should follow up by viewing David Tuller’s IIMEC12 pre-conference dinner presentation [3].

Two presentations clearly showing the failings of establishment organisations and their supporters – and the misery dished out to people with ME.

Effect and Cause.  

While Dr Esther Crawley - the SMILE PI – has been congratulated by the chair of the CFS/M.E. Research Collaborative (cmrc) for her stunning and amazing work;

while the chair of the cmrc may be “thrilled” that four years down the line from its inception his organisation merely has a room full of people at its meeting to show for that period – and is unable to avoid the realisation that this organisation has achieved nothing of significance;

while some are sitting happily in the establishment big tent alongside the SMILE Trial PI and do not see anything incongruous in that situation;

while some who never objected to the trial in the first place now seem to want to appear concerned;

while the establishment media centre pumps out more spin about ME,

while lazy journalists do no research on the subject and continue to act as puppets of biased media editors ;

while this entire circus continues people are suffering from this disease.

All of these years have gone past – and nothing has fundamentally changed regarding establishment policies towards research into ME it seems.

And the lives of patients roll by – with many who influence research policies for ME, and their supporters, seemingly oblivious to the waste of life, of opportunity, of any sense of really making a difference to families affected by this crippling disease.

The LP business has no place in serious research and cannot be researched seriously, as it tells people to keep its methods secret, to deny they have ME.

This alone should be a big red flag to anyone.

How funding could have been given to this in the first place ought to be a subject for the media to research.

These quick and dirty solutions to a society increasingly founded on soundbite healthcare will leave a trail of sick patients and despairing carers, and a tragic dystopia.

And everyone, save for perhaps the business practitioners, will be the poorer for it.




4. Crawley EM, Gaunt DM, Garfield K, et al Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial Archives of Disease in Childhood Published Online First: 20 September 2017. doi: 10.1136/archdischild-2017-313375


Apart from the last two paragraphs, it’s encouraging to see this in The Times today -

The Times: Mutiny by ME sufferers forces a climbdown on exercise treatment


By Tom Whipple, Science Editor, The Times, 25 September 2017.

A patient revolt in collaboration with MPs and academics has led to a major review of NHS guidelines on the treatment of ME.

The reassessment of recommendations for the condition will consider the validity of a £5 million taxpayer-funded trial that claimed sufferers could be helped by simple lifestyle intervention.

About 200,000 people in the UK suffer from myalgic encephalomyelitis (ME), also sometimes known as chronic fatigue syndrome (CFS). Its symptoms include debilitating tiredness, joint pain and concentration problems, and its causes are poorly understood.

In 2011 a UK study published in The Lancet found that patients could experience significant improvements through exercise and cognitive behavioural therapy. Its findings have since formed the basis of treatment in the UK and abroad.

However, patient groups claimed that the interventions made them worse and argued that the treatment wrongly implied it was a psychological, rather than biological, illness. Some academics agreed.

In an open letter to The Lancet, more than 40 academics from UCL, Stanford, Columbia and University of California, Berkeley, among others, argued that the trial had “major flaws”, which included changing its criteria for patient improvement midway through.

They said that this was of particular concern “because of its significant impact on government policy, public health practice, clinical care and decisions about disability insurance and other social benefits”.

The severity of CFS means people are often unable to hold down jobs or live normal lives.

Keith Geraghty, from the University of Manchester, said that the apparent improvements in some patients could be better explained by initial misdiagnosis, and that the benefits were marginal. “The problem is, if you look at patients when you do nothing there is a similar level of recovery,” he said.

Because the criteria for measuring recovery was changed, it was also not clear what recovery even meant, he said. “It became farcical because once they did that patients who began the trial as sick could have been deemed recovered when they started.”

The debate about the trial has become one of the most acrimonious in science, with both sides claiming they have been abused by the other. The US has now changed its recommendations.

The National Institute for Health and Care Excellence (Nice) has been receiving strenuous lobbying to do the same, and this month pressure was increased when 30 MPs signed an early day motion urging a review.

This week Sir Andrew Dillon, chief executive of Nice, said that it would carry out a full review, expected to report back after 2020.

Trudie Chalder, professor of cognitive behavioural psychotherapy at King’s College London, was one of the authors of the original 2011 Lancet paper. She welcomed the review and said that subsequent trials showed that exercise and cognitive behavioural therapy remained the best treatment.

“There have been several well conducted trials from independent researchers showing that rehabilitative treatments such as cognitive behavioural therapy and graded exercise therapy improve people’s lives,” she said. “Professionals who provide evidence-based treatments need an update on the state of play.”


Friday, 22 September 2017

When you beckon lightning and invite it in for tea



By February 2007, I had been receiving daily Nexavir injections (an antiviral) for six months and I was actually starting to see small improvements in my health for the first time in over two years of being acutely ill. But friends and relatives kept sending me newspaper cuttings of articles about the Lightning Process (LP) curing people with ME. I became under enormous pressure to do the LP (“What’s the harm in trying it?” “Don’t you want to get better?” “It has helped others so it’s worth a shot”). I was only 20 years old, vulnerable because of my desperation to get better, and didn’t know much about Myalgic Encephalomyelitis and what the illness actually was (a multi-systemic, neuroimmune illness). By that time, I also had been gaslighted by so many NHS doctors and private doctors about my illness and symptoms, that I was doubting myself. When so many people disbelieve you, you start disbelieving yourself, despite all physical evidence to the contrary. In the end, I buckled and, although sceptical, I agreed to do the LP. I was so ill and I just wanted to get better.

Ironically, I wouldn’t have even been able to get to the LP practitioner’s house (he was an NHS doctor but did the LP privately) even a couple of months previously but because of the small improvements due to the Nexavir injections, I was able to get down the stairs and lie down in the back of our car to get there. There were consequences for my body but I thought that it would be worth it.

I’m not going to go into detail about the “mechanics” of the LP; other people have debunked the methods far better than I’m currently able to. Back then, I decided to throw myself into the LP and be totally committed to doing it properly. The results, however, were nothing less than disastrous for me.

First, the fully-qualified practitioner artfully gaslighted us (a group of four patients) with what I now know is pseudoscience quackery about M.E.; it was done in such a subtle, convincing and skilful way (even experienced scientists have been taken in by it). Using “science” to explain, he told us how we didn’t ‘have’ an illness but that we were ‘doing’ an illness; it was our thoughts, behaviours, and fears about post-exertional symptoms that were causing us to stop ourselves from living normally and causing us to believe that we had symptoms and to believe that we were ill.

He then put mechanisms into place in my brain, via neuro-linguistic programming, that made my own brain automatically gaslight me constantly and stop any thoughts of symptoms dead in their tracks. He added repetitive gestures/movements/phrases that I had to continually apply to my thoughts and body in order to reinforce the programming. This is brainwashing.

It’s hard to describe being brainwashed. The next six months in 2007 after the LP are still a hazy blur to me. Not only did the neuro-linguistic programming in my brain not allow me to ever mention any symptoms to anyone, I was not even allowed to think that I had any symptoms. I wasn’t allowed to be ill anymore. I pushed and pushed myself, even when in the most excruciating pain, even when I was in heart failure or experiencing seizures or passing out, because they didn’t exist. My illness didn’t exist [even though I was extremely ill, I honestly believed that I wasn’t ill anymore, that I was cured]. It sounds ridiculously idiotic but that’s what brainwashing can do. My body was becoming more and more damaged from the enforced gradual Graded Exercise Therapy that the programming in my brain was imposing on myself. It was completely out of my control; I felt glazed over and not with it.

As per what I’d been conditioned and instructed to do during the LP training, I told everyone that I was no longer ill and that I was recovering. I’m pretty sure that I told all my friends and family that I was in recovery, that the Lightning Process had been successful and had worked. I even had a huge 21st birthday/’I’m better now’ party in a village hall, celebrating recovery from illness. Remembering it now is upsetting. I had the biggest smile on my face the whole time and looked fine to everyone but would have to frequently escape into the toilets where I would almost black out and would collapse on the floor for a while. I was in oxygen starvation from being upright and from heart failure. I was very dizzy and everything was spinning around me because of my very low blood pressure. All my muscles were screaming at me. Nobody had any idea that this was happening to me; the LP programming prevented me from being able to tell anyone or from even acknowledging my symptoms to myself. They didn’t exist because I wasn’t ill. It’s just a haze to me now.

In the following months, I kept on pushing myself, doing insane damage to my body (I pushed myself to the point where I was going on a slow 5-minute walk every few days, which was a huge deal for me considering I had been bed-bound for two years) until one day in August 2007, when my parents were away, I pushed myself too far and went on a longer walk. At the end, my body failed and packed in completely; the six months caught up with me and I collapsed. I was never able to get up again. Ever since, I have been bed-bound, unable to sit up and unable to speak, struggling to breathe and swallow. The permanent organ damage that was done during March to August 2007 during the self-imposed GET due to the LP brainwashing, was devastating. I never recovered from it and my health has only deteriorated since. The hold that the brainwashing had over me was broken pretty quickly and thoroughly that August, thank goodness. But I can’t remember much from those six months.

Today it is being reported in the news that an experimental trial of the LP on children and teens with M.E. has been successful. The fact that the results are based on the children and teens themselves saying that they have recovered, is extremely worrying to me. During the six months that I was brainwashed with the LP, I would have said the same: that I was cured, that I was recovering and that the LP was successful. Those poor children. They are even more vulnerable than I was. What they have been subjected to is nothing short of abuse and should never have been allowed to happen in the first place.

Whatever you do, please don’t send news articles about the Lightning Process to anyone with M.E. It’s a dangerous thing. Don’t beckon lightning and invite it in for tea; it will burn your house to the ground with you inside until you’re nothing but ashes.

Monday, 18 September 2017

And they follow Me

http://bible.christiansunite.com/Morning_and_Evening/chme0918.shtml

C H Spurgeon's Evening Devotional for 18th September

"And they follow Me."

John 10:27

We should follow our Lord as unhesitatingly as sheep follow their shepherd, for He has a right to lead us wherever He pleases. We are not our own, we are bought with a price-let us recognize the rights of the redeeming blood. The soldier follows his captain, the servant obeys his master, much more must we follow our Redeemer, to whom we are a purchased possession. We are not true to our profession of being Christians, if we question the bidding of our Leader and Commander. Submission is our duty, cavilling is our folly. Often might our Lord say to us as to Peter, "What is that to thee? Follow thou Me." Wherever Jesus may lead us, He goes before us. If we know not where we go, we know with whom we go. With such a companion, who will dread the perils of the road? The journey may be long, but His everlasting arms will carry us to the end. The presence of Jesus is the assurance of eternal salvation, because He lives, we shall live also. We should follow Christ in simplicity and faith, because the paths in which He leads us all end in glory and immortality. It is true they may not be smooth paths-they may be covered with sharp flinty trials, but they lead to the "city which hath foundations, whose builder and maker is God." "All the paths of the Lord are mercy and truth unto such as keep His covenant." Let us put full trust in our Leader, since we know that, come prosperity or adversity, sickness or health, popularity or contempt, His purpose shall be worked out, and that purpose shall be pure, unmingled good to every heir of mercy. We shall find it sweet to go up the bleak side of the hill with Christ; and when rain and snow blow into our faces, His dear love will make us far more blest than those who sit at home and warm their hands at the world's fire. To the top of Amana, to the dens of lions, or to the hills of leopards, we will follow our Beloved. Precious Jesus, draw us, and we will run after Thee.

Saturday, 2 September 2017

The Emotional Toll Of Not Being Heard


By Christina Baltais

This story won’t be particularly unique or shocking to anyone living with ME. Every single one of us has a plethora of stories like this, and far worse than this. It has happened so many times over the last 11 years. What shocks me is the degree to which it still occurs and manages to affect me, no matter how much time I spend trying to advocate for ME.

I was out to eat with extended family members. It was my first outing in weeks, since I had been housebound due to symptoms. An outing after a long period of solitary confinement is a rather momentous occasion. I was so grateful to be out of that bed, out of that bedroom, out of that house. The vibrant world that felt so far away, I now found myself immersed in, taking in everything around me like a grateful sponge. I was basically a bear emerging from a den after a long, long hibernation (minus any refreshing sleep).

When I sat down, the usual catch-up conversation ensued. Updates on my health eventually came up. I said that its been my first outing in quite some time after a rough patch. This statement could have been followed by words that were supportive/empowering/neutral, but it wasn’t. This family member went on to comment that I looked fine, and was sitting up just fine at the table right now. I responded by saying that sitting up was actually very difficult for me because I was experiencing a great deal of weakness, and would need to rest after this outing when I got home. This was followed by a comment indicating that if I was sitting up now, why couldn’t I find a job where all I had to do was sit up and type? Why couldn’t I look for jobs like that? Was I not even going to try? After all that schooling, was I just going to waste my life?

You have got to be kidding me. (And some other words that I can’t say.)

A long uncomfortable silence ensued. I felt the familiar pangs of shame, humiliation, and judgement by someone who not only knew nothing about ME, but who also did not want to listen. No one at the table said anything in my defence, their passive silence feeling like implied agreement. I honestly believe this person’s intent was good, but how disconnected from my experience could they possibly have been to not realize the impact of their words and the implications of their statements. I really embrace the importance of talking about my body and ME as a source of education, but the first caveat always has to be that my voice and experience is heard, valued, and respected. This was another case where it clearly had not been. For if anyone was connected to the experience of ME, they would understand the absolute hell a person goes through. The depths of despair and grief this disease drags you through; it was never a choice. The inner turmoil of having a heart that wants the world everyday, but having a body constantly saying no; you forfeit any control over the direction of your life. I chose ME just as much as the millions of people around the world chose ME; we didn’t. I realize I’m preaching to the choir. The point is, I should not have to spend an outing defending and proving in hopes of understanding. I’m not wasting any precious spoons on that. It just hurts so much, still, even after 11 years.

As human beings we all need to feel love and connection. There is a deep-seated need to feel unified, to have approval, acknowledgement, acceptance—-to feel connected with, intimate and loved by, other human beings. When you are already so physically isolated due to illness, situations that make you feel emotionally and socially isolated take it to an entirely different level. It adds another layer of suffering. As if I didn’t feel disconnected and like an outsider enough already. It’s situations like this that make me realize how much during these 11 years I have not been believed or heard. It’s situations like these that make me realize how exhausting it is to constantly be vying for the understanding of others.

What’s even harder is when it comes from family, as this one did. What’s even more disheartening is that this individual is also a doctor. When I was undergoing medical training myself, some supervisors I highly respected displayed a clear lack of understanding about ME.  One spoke of how you have to wonder how much of “the behaviour” is learned as it runs in families. I was told to recommend to an ME patient that they strap on a backpack full of weights and jump on a trampoline to increase bone mineral density. It was explained to me how a new physical symptom could only be psychosomatic “as anxiety is common in that demographic so that is the only plausible explanation for that extreme symptom.” Unbeknownst to them, I had ME and these comments illuminated the presumptions, assumptions, and rampant inaccuracies perpetuated by a lack of knowledge in our medical systems. They were extremely disappointing and painful to hear, as I’ve been on the receiving end of all these assumptions and exacerbating recommendations as a patient myself. The lack of knowledge and understanding is systemic; experiencing and bearing witness to how ME has been relegated to the margins of our medical system has been traumatic.

The history of ME’s constant invalidation and abhorrent lack of research funding is disturbing. I wish people would listen. I wish they would trust our experiences and accounts of our own bodies, or in some cases, of our children’s bodies. How healing the words, “I believe you,” would would be for all of us. Sometimes, the emotional toll feels worse than the actual disease itself.

We don’t know when the pathological basis of ME will finally be understood. We should not have to wait for that, to be shown the much needed empathy and compassion which we deserve. Why it takes “proof” in order to actually listen to literally millions of voices saying the same thing over decades of time baffles me. When I think of the millions of lives lived, and some ended, in complete suffering—-without voices, it enrages me. If their suffering had been validated and acknowledged, even if treatment was still not available, would it not have made a difference? The injustice of it all enrages me. Anger is often a signal something is not working, and that means something needs to change. Change is possible and can come soon for all of us. Change needs to come especially for those of us who are unable to use their voices, or even read this.

There are many ways to get involved in creating change for health equality and ME awareness. Be a part of the #TimeforUnrest global impact campaign. This campaign advocates for more recognition, education, research, and funding around ME. You can help advocate for our voices to be heard, by hosting a screening of Unrest in your community. You can join the #TimeforUnrest Facebook group, and share and promote the campaign on social media.  For more ideas on how to be a part of the change, click here.

Imagine how different the world’s perception of this disease could be; and for an end to the stigma and misconceptions we’ve all experienced. Imagine with research the pathological basis of ME understood, and treatments being offered. We can make this change happen, and we can make this change happen together.

About the author: Christina, 31, lives in Toronto, ON. She holds a Bachelor’s Degree in Science and has a fine arts background. She became ill with ME while completing her Bachelors. This inspired her to become a naturopathic medical doctor in order to better understand how to heal the body. One month before completing her medical degree, her ME progressed. She has been slowly recovering, using writing, music, art, and nature as a means for processing this experience.

Friday, 1 September 2017

At symposium, researchers and patients examine molecular basis of chronic fatigue syndrome

(Again, if only they would say ME, Myalgic Encephalomyelitis, instead of CFS)


Posted on: August 25, 2017

by Raeka Aiyar, PhD

Ron Davis, PhD, calls chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME/CFS) the “last major disease about which we know almost nothing.” That’s because at least a million Americans are debilitated by ME/CFS, and yet no clear cause is known, no treatments are approved; funding, understanding, and awareness are disproportionately limited. Yet thanks in part to a boost in advocacy and fundraising efforts, there is increasing cause for hope, many researchers and patients believe.

Earlier this month, several hundred researchers, doctors, patients and caregivers joined forces for the Open Medicine Foundation’s Community Symposium on the Molecular Basis of ME/CFS chaired by Davis at Stanford University, with another 2,700 worldwide joining online. Known for his contributions in biotechnology and genomics, Davis has rerouted his career to tackle this disease and save his critically ill son. He’s brought together an interdisciplinary team of collaborators, many of whom spoke at the symposium. “The Human Genome Project taught us that we can take on a large project like this and succeed,” Davis said.

The event focused on a new understanding of ME/CFS as a molecular disease. Davis’ team has taken this perspective in an omics and big data study of severely ill patients. Wenzhong Xiao, PhD, Davis’ collaborator at Massachusetts General Hospital and Harvard Medical School, presented a preliminary analysis of this dataset, including efforts to use it to define biomarkers and predict causative factors.

Davis presented his technology-driven approach to unraveling ME/CFS, noting that if sequencing technologies had been available at the time, “we would have figured out AIDS in a couple of weeks.” He presented a nanotechnology developed at the Stanford Genome Technology Center that can successfully distinguish patient blood samples from healthy ones, based on their response to stress in the form of increased salt concentration. This presents the potential for a blood-based diagnostic – a transformative prospect for a field reliant on lengthy, subjective diagnoses.

A core issue in ME/CFS is massive energy depletion, so much research is focused on the mitochondria, the organelles inside cells that are responsible for energy generation. Keynote speaker and mitochondrial physiologist Robert Naviaux, MD, PhD, from the University of California, San Diego, suggested that the ‘cell danger response’ to stressors, which prevents cells from returning to baseline function until healing is complete, is prolonged in ME/CFS, which is consistent with observations of reduced metabolism in patients.

Naviaux’s theory also syncs with reports of common infections triggering the development of ME/CFS. In fact, Davis’ cell-free DNA sequencing revealed no exceptional types or levels of pathogens in patients. “It’s not the stressors themselves, but an inability to resolve them and heal afterwards,” Naviaux said.

Stanford immunologist Mark Davis, PhD, presented evidence suggesting that ME/CFS could be an autoimmune disease: using single-cell sequencing, his lab has observed an increase in patient T cells that share a particular target, a signature of an immune response. He said he is investigating what these T cells are targeting.

Nobel Laureate Mario Capecchi, PhD, from the University of Utah, presented a study in mice that shows a connection between the immune system and the brain in a genetic condition that shares some traits with ME/CFS. He also noted how important patient participation is in studying any disease, and how impressed he was with the ME/CFS patient community.

With so much patient engagement, collaboration, and community spirit – not to mention the many theories and new datasets, researchers say it is an exciting time for the field. Many attendees said they were amazed at how much has been accomplished with such scant resources. The event closed with a standing ovation.

To support ME/CFS research, please donate to OMF today. For more about the symposium, check out the YouTube video of the event or read coverage in The Mercury News.

A version of this post originally appeared on the Stanford Medicine Scope Blog.

Tuesday, 22 August 2017

The 2017 Invest In ME Research Conference Report – Dr Charles Shepherd


From the ME Association website -

The 2017 Invest In ME Research Conference Report – Dr Charles Shepherd | 22 August 2017

The Invest in ME Research conference took place on Friday, 2nd June, 2017.

This year’s conference was held at One Great George Street, an impressive Edwardian building located opposite St James’s Park, London. There was an excellent mixture of people with ME/CFS, carers and parents, charity representatives, health professionals and researchers from all over the world.
  • There was an emphasis on immunology and new approaches to research that are aimed at increasing our understanding of the underlying disease process in ME/CFS and research to potentially deliver more effective forms of treatment.
  • Presentations covering treatment were largely focused on the clinical trials taking place in Norway into the use of rituximab and cyclophosphamide.

* This is a copy of the conference summary that was published in the Autumn issue of ME Essential magazine
* We have made Dr Shepherd’s full (16-page) conference report available as a download, which might make it easier for people with M.E. to read at their own pace

Summary review

Chairman, Dr Ian Gibson opened the meeting with some quotes from a letter written by Sir Bruce Keogh, National Medical Director at NHS England, relating to discussions that are currently taking place at NICE. Current NICE guideline recommendations relating to CBT and GET were referred to in this letter.

Professor Ian Charles of the Quadram Institute of Food Health, University of Norwich: Prof. Charles spoke about the important overlap between food and health and the role of the microbiome in helping to regulate the body’s immune system and the signalling systems that link the brain and gut. He explained how research is starting to provide new insights about possible causal mechanisms in diseases such as diabetes and obesity.

Dr Vicky Whittemore, Programme Director, National Institutes of Neurological Disorders and Stroke at NIH, USA: Dr Whittemore explained how the NIH (National Institutes of Health) operates and talked about how it funds research. There are 27 separate institutes and centres at NIH, each with a specific research  agenda focused on diseases or body systems and, as ME/CFS is an illness that covers a wide range of symptoms and body systems, it now has 24 different homes at NIH! NIH is also setting up a ME/CFS Data Management Co-ordinating Centre and arranging educational seminars on ME/CFS.

Professor Donald Staines, National Centre for Neuroimmunology and Emerging Diseases, Griffiths University, Australia: The presentation focused on the work that Professor Staines and his team have been doing at a molecular level on calcium ion channels and cellular signalling mechanisms that involve calcium ions. This is a process that could link in with some of the immune system disturbances found in ME/CFS. It is possible that disturbances in the way that calcium ions are behaving in ME/CFS could form part of the underlying disease process.

Professor Nancy Klimas, Director, Institute for Neuroimmune Medicine, Nova Southeastern University, USA, has put together a large multidisciplinary team, led by two ‘Blue Ribbon Fellowship’ medical students, who are concentrating on the genetic component, aiming to understand the genetic risk in ME/CFS and the possible role of gene mutations. This global study could help to provide a ‘genetic signature’ for ME/CFS and explain why some people recover from ME/CFS and others do not.

From the Karolinska Institute, Sweden, Dr Jakob Theorell’s research focuses on people who have immunodeficiency syndromes. In relation to ME/CFS, he has been looking at a specific part of the immune system orchestra called cytotoxic lymphocytes. These are cells that combat intracellular infections with dysfunctional abnormalities being reported in previous research studies.

Fane Mensah, PhD student at University College London presented a summary of key points from a paper which has reviewed the immunology of ME/CFS. The most consistent abnormality to be reported in ME/CFS is a decrease in number and function of NK (natural killer) cells. Studies that have looked at cytokines (immune system chemicals) have produced inconsistent results. However, there is some evidence of changes in the cytokine make up in relation to illness duration.

Dr Jo Cambridge, Professorial Research Assistant at University College London, belongs to a well established research group at UCL that has a particular interest in drug treatment (rituximab in particular) relating to the depletion of a component of the immune system orchestra called B cells. The group has also been exploring how B cell depletion helps to modify the disease process in rheumatoid arthritis through removing immune complexes and reducing inflammation in the joints.

Professor Simon Carding, Leader in Gut Health and Food Safety Programme a the Institute of Food Research, Norwich Research Park introduced four PhD students who are looking at components of a research hypothesis that involves the gut.

Professor Mady Hornig, Associate Professor, Centre for Infection and Immunity, Columbia University Mailman School of Public Health, New York: Professor Hornig’s research focuses on infective, immune and toxic  stimuli relating to conditions that range from autism to ME/CFS. She has a particular interest in establishing how genes and maturational factors can interact with environmental triggers, leading to various brain disorders. Her ME/CFS research has concentrated on establishing whether there are immune system profiles/signatures that are characteristic of the disease and identifying infections that are linked to ME/CFS.

Professor Olav Mella, Dept. Director, Oncology, Haukeland University Hospital, University of Bergen, Norway: Professor Mella spoke on the current state of two separate clinical trials in Norway involving rituximab and cyclophosphamide, looking back at how rituximab, a drug that is normally used in cancer treatment, became a possible treatment for ME/CFS. As an oncologist, his interest in the use of this drug in ME/CFS occurred after three patients with lymphoma, who also had ME/CFS, noticed that their ME/CFS significantly improved whilst receiving rituximab.

Dr Ingrid Rekeland, Dept of Oncology, Haukeland University Hospital, University of Bergen, Norway: Dr Rekeland is investigating whether there is a metabolic obstruction in the pathway that creates glucose into energy inside the mitochondria and whether this could help to explain some of the key symptoms of ME/CFS and the rise in lactic acid production on exertion in some people with ME/CFS.

Professor Warren Tate, Group Leader, Biochemistry Department, School of Biomedical Sciences, University of Otago, New Zealand, opened his presentation by explaining that his research interest in ME/CFS research resulted from his daughter developing the illness at the age of 14. This followed an episode  of Epstein-Barr infection/glandular fever almost 20 years ago. He likened the cause of ME/CFS to a large jigsaw puzzle where we had only some of the pieces in place.

Professor Ron Davis, Professor of Biochemistry and Genetics, Stanford School of Medicine, California, USA, is also involved in ME/CFS research as a result of having a seriously ill son. He updated the meeting on his research that is looking at the molecular basis to ME/CFS, how this should help to increase both our understanding of the underlying disease process and how this information can then be used to provide effective forms of treatment.

We have made Dr Shepherd’s full (16-page) conference report available as a download, which might make it easier for people with M.E. to read at their own pace.