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The third (second open) IOM meeting May 5th

Bob

Senior Member
Messages
16,455
Location
England (south coast)
An update...

We've been doing some research on Megan Arroll in the group that I've just set up, and I couldn't find any unreasonable quotes directly associated with her.

It seems that she has been the research director, at the Optimal Health Clinic, but we're not sure if she still works for them.

I also haven't been able to directly associate her with any of the promotional material on the Optimal Health Clinic website. (A research director doesn't necessarily agree with everything written on her employer's website.)

I've found two research papers, by Megan Arroll, which I've posted above, which I thought were both fairly reasonable, and sensibly written, even if I don't agree with the need to research psychological treatments in relation to ME. The papers don't make any outrageous or exaggerated claims. I actually found it difficult to find anything that I objected to, except for the general suggestion that psychological treatments may help improve physical functioning in ME (there's very little general evidence to support this.) The discussions were not over-spun, and any claims were very conservatively and cautiously worded. In the most controversial content of one of the papers - a discussion about EFT and NLP etc. - it was claimed that these therapies are intended 'primarily' to treat anxiety associated with chronic illness. (Although, perhaps that's a bit slippery.) Further discussions in the paper go on to discuss improvements in ME after these treatments, but I didn't read any outlandish or offensive claims. Perhaps if I read the paper in more detail, then I might be able to find something that I found offensive.

The general suggestion, that psychological interventions can improve physical function in ME, is obviously problematic, but the paper does not make the exaggerated and problematic claims that other psycho-social research makes with regards to psychological interventions being a treatment or cure for ME or CFS. The papers include sensible discussions about the nature of the illness.

A new paper, that has been posted above, seems positively helpful. Except that I've only read the abstract.

The new paper discusses "proinflammatory cytokines" which can "lead to significant impairments in cognition..."
And it goes on to say that "fatigue and depression may be a result of the neurobiological effects of ME/CFS and in addition, that the neurobiological effects of the illness may give rise to both fatigue and cognitive deficits independently."


So, unless I've missed something, I don't personally have a major problem with Megan Arroll.

But I do have a problem with the IOM not inviting one of the many other researchers who are firmly planted in biomedical research.
 
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lartista

Senior Member
Messages
139
Could you clarify what you mean here please, lartista?
i.e. What link are you making between Megan Arroll and the Lightning Process here?
I would need to research it a little more but I was told by a ME/CFS advocate that Megan Aaroll'g group uses that technique... The lightening group was found guilty of false advertising on medical benefits and using mail out surveys did not count as credible...

Megan Aaroll medical research paper above sends out the survys to who they see fit, doesn't check who diagnosed the ME/CFS or it is was even diagnosed and then files her paper as medical research... link is somewhere above...

"Have you seen the agenda for the May 5th meeting? One name stands out: Dr. Megan Arroll, Director of Research for The Optimum Health Clinic in London. The Clinic uses a number of alternative medicine treatments, including techniques derived from the Lightning Process and Mickel Therapy. Their approach is based on the chronic stress model of the disease. So part of the choice we have to make is whether we will cede the floor to this perspective. Should we allow that perspective to go unchallenged and unanswered? Should we leave it to the ME/CFS experts on the panel to make that argument for us?" This if from Occupy CFS. here the link: http://www.occupycfs.com

I am hearing very mixed reviews about this place where she works. I am sure they have some good information on nutrition and some blood tests but when i had them send me the information and I watched their videos, I got mixed feeling because the price included skype video session using their therapy technique...
 

lartista

Senior Member
Messages
139
An update...

We've been doing some research on Megan Arroll in the group that I've just set up, and I couldn't find any unreasonable quotes directly associated with her.

It seems that she has been the research director, at the Optimal Health Clinic, but we're not sure if she still works for them.

I also haven't been able to directly associate her with any of the promotional material on the Optimal Health Clinic website. (A research director doesn't necessarily agree with everything written on her employer's website.)

I've found two research papers, by Megan Arroll, which I've posted above, which I thought were both fairly reasonable, and sensibly written, even if I don't agree with the need to research psychological treatments in relation to ME. The papers don't make any outrageous or exaggerated claims. I actually found it difficult to find anything that I objected to, except for the general suggestion that psychological treatments may help improve physical functioning in ME (there's very little general evidence to support this.) The discussions were not over-spun, and any claims were very conservatively and cautiously worded. In the most controversial content of one of the papers - a discussion about EFT and NLP etc. - it was claimed that these therapies are intended 'primarily' to treat anxiety associated with chronic illness. (Although, perhaps that's a bit slippery.) Further discussions in the paper go on to discuss improvements in ME after these treatments, but I didn't read any outlandish or offensive claims. Perhaps if I read the paper in more detail, then I might be able to find something that I found offensive.

The general suggestion, that psychological interventions can improve physical function in ME, is obviously problematic, but the paper does not make the exaggerated and problematic claims that other psycho-social research makes with regards to psychological interventions being a treatment or cure for ME or CFS. The papers include sensible discussions about the nature of the illness.

A new paper, that has been posted above, seems positively helpful. Except that I've only read the abstract.

The new paper discusses "proinflammatory cytokines" which can "lead to significant impairments in cognition..."
And it goes on to say that "fatigue and depression may be a result of the neurobiological effects of ME/CFS and in addition, that the neurobiological effects of the illness may give rise to both fatigue and cognitive deficits independently."


So, unless I've missed something, I don't personally have a major problem with Megan Arroll.
I would need to research it a little more but I was told by a ME/CFS advocate that Megan Aaroll'g group uses that technique... The lightening group was found guilty of false advertising on medical benefits and using mail out surveys did not count as credible...

Megan Aaroll medical research paper above sends out the survys to who they see fit, doesn't check who diagnosed the ME/CFS or it is was even diagnosed and then files her paper as medical research... link is somewhere above...

"Have you seen the agenda for the May 5th meeting? One name stands out: Dr. Megan Arroll, Director of Research for The Optimum Health Clinic in London. The Clinic uses a number of alternative medicine treatments, including techniques derived from the Lightning Process and Mickel Therapy. Their approach is based on the chronic stress model of the disease. So part of the choice we have to make is whether we will cede the floor to this perspective. Should we allow that perspective to go unchallenged and unanswered? Should we leave it to the ME/CFS experts on the panel to make that argument for us?" This if from Occupy CFS. here the link: http://www.occupycfs.com

I am hearing very mixed reviews about this place where she works. I am sure they have some good information on nutrition and some blood tests but when i had them send me the information and I watched their videos, I got mixed feeling because the price included skype video session using their therapy technique...
 

lartista

Senior Member
Messages
139
Bob, I need to go to bed as it is late... but I found a whole link of scary ties on her. Google her name and MESH trustee. Then at that link take the man TONY G. (I think) and google him with "Action for ME". Then go to their page for treatments and your will find MOOD something, GET, CBT and certified therapist... then when i went deeper this TONY G. man has his meeting at the Wessley Kings College... then The sir Simon Wessely is tied in with another woman doctor but all this is from vague memory as I did it today.... Then look up Dr. Nigel Speight's resignation letter from Action For ME. I have yet to check out the names she states as her funding for her college paper... I live in Italy and NOT ONE person who knows about their place said good thing... i was open to seeing both sides but it sound too fishy... ALSO if you google correctly her name and SOMATIC, you will find she has books and paper on this but you must google correctly... their basis is WE HAVE ISSUES.... and that it the driving force that makes our flight or fight go off... not too good... and very dangerous i think....
 

lartista

Senior Member
Messages
139
Bob, you got to dig deeper..
  • Complementary medicine
A preliminary prospective study of nutritional, psychological and combined therapies for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in a private care setting
  1. Megan Anne Arroll,
  2. Alex Howard
+Author Affiliations

  1. drarroll@theoptimumhealthclinic.com
  • Received 27 February 2012
  • Accepted 15 October 2012
  • Published 19 November 2012
Abstract
Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition characterised by severe and persistent fatigue, neurological disturbances, autonomic and endocrine dysfunctions and sleep difficulties that have a pronounced and significant impact on individuals’ lives. Current National Institute for Health and Clinical Excellence guidelines within the UK suggest that this condition should be treated with cognitive behavioural therapy and/or graded exercise therapy, where appropriate. There is currently a lack of an evidence base concerning alternative techniques that may be beneficial to those with ME/CFS.

Objectives This study aimed to investigate whether three modalities of psychology, nutrition and combined treatment influenced symptom report measures in those with ME/CFS over a 3-month time period and whether there were significant differences in these changes between groups.

Design and setting This is a preliminary prospective study with one follow-up point conducted at a private secondary healthcare facility in London, UK.

Participants 138 individuals (110 females, 79.7%; 42 participants in psychology, 44 in nutrition and 52 in combined) participated at baseline and 72 participants completed the battery of measures at follow-up (52.17% response rate; 14, 27 and 31 participants in each group, respectively).

Outcome measures Self-reported measures of ME/CFS symptoms, functional ability, multidimensional fatigue and perceived control.

Results Baseline comparisons showed those in the combined group had higher levels of fatigue. At follow-up, all groups saw improvements in fatigue, functional ability and symptomatology; those within the psychology group also experienced a shift in perceived control over time.

Conclusions This study provides early evidence that psychological, nutritional and combined techniques for the treatment of ME/CFS may influence symptomatology, fatigue, function and perceived control. However, these results must be viewed with caution as the allocation to groups was not randomised, there was no control group and the study suffered from high drop-out rates.


http://bmjopen.bmj.com/content/2/6/e001079
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
So part of the choice we have to make is whether we will cede the floor to this perspective.
If we're going to have a discussion with the committee in relation to the nature of ME, and how/why it isn't a psychological disorder, then that's fair enough. But I'm struggling to find anything to link Megan Arroll with the view that ME is a somatoform disorder.

I'll try to have a look at your suggestions later. Thank you.

BTW, yes, the Lightning Process was found to make false claims, but that doesn't mean that Megan Arroll makes false claims about the Lightning Process, if she uses it. If she uses it to treat ME, then obviously that raises a question or two.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Bob, you got to dig deeper..
  • Complementary medicine
A preliminary prospective study of nutritional, psychological and combined therapies for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in a private care setting
  1. Megan Anne Arroll,
  2. Alex Howard
Thanks. I posted and discussed this earlier. If you read it, then please find me a quote that you find offensive. I couldn't find one.
 

lartista

Senior Member
Messages
139
she does mail out surveys to people "who ask" to be in her survey. She does not qualify the criteria for ME/CFS that they have and she does not even require them to have a "formal diagnosis of ME/CFS" by an expert or anyone in fact, just ruled out other illnesses. She excluded house and home bound ME/CFSer from this particular survey last month... She is affiliated with MESH and Action for ME. Do your research and you will find it... I have done mine.... If I had to vote yes or no to her... IT'S A BIG FAT NO....and my research is not done... you can't skim the water and expect to get the slime from the bottom....
 

lartista

Senior Member
Messages
139
"David LaShell wrote on my FB If you read her abstract and what they are looking for is this, they believe that CFS/ME is real but is exaggerated by the individual perceptions, thus psychological by nature."
She only wrote her school paper in 2009... very new to the filed and was a study of "Thesis submitted for the award of Doctor of Phllosophy"... that's the type of doctor you want? She looks at emtional moods and exageration in people and how psoitive they are as an indicator or how sick you are or your recovery. Where are her blood tests? What are her medical body tests (VO2MAX, TilT)? What are jer emotional instability tests and mental illness tests used? (Tons)
Her work is based on Department of Psychology, not medical science...

The Lightening group got punished for stating mailing our interviews was a valid for of response to a treatment.... so what is she continuing to do.... FAKE RESEARCH! She mails out interviews to who ever agrees... but more bogus research is that? Has anyone even seen what the questions are on these questionnaires to see if they all slanted to mental issues? She is a lost youngbee trying to run with the big boys and make her name. Many people in England wrote to me and said they are very expensive, do therapy sessions to change you perspective and attitude, mental illness screening (moods) and diet and vitamins... which is good that last thing... Her therapy is the COPYRIGHTED newer form of : The Lightning Process (LP) is a trademarked[1] three-day personal training programme developed by British osteopath Phil Parker.[2] Developed in the late 1990s, the three day course aims to teach participants techniques for managing the acute stress response that the body experiences under threat. The course aims to help recognise the stress response, calm it and manage it in the long term. It draws on ideas developed by osteopaths. It also applies some ideas drawn from neurolinguistic programming, as well as elements of life coaching. It claims to be beneficial for various conditions, including chronic fatigue syndrome, depression and chronic pain. Evidence of efficacy from randomized trials is currently lacking (a clinical trial regarding chronic fatigue syndrome has been registered[1]). The approach has raised some controversy.[3][4
Neuro-linguistic programming (NLP) is an approach to communication, personal development, andpsychotherapy created by Richard Bandler and John Grinder in California, United States in the 1970s. Its creators claim a connection between the neurological processes ("neuro"), language ("linguistic") and behavioral patterns learned through experience ("programming") and that these can be changed to achieve specific goals in life.
READ THIS PART...
NLP as quasi-religion
Sociologists and anthropologists—amongst others—have categorized NLP as a quasi-religion belonging to the New Age and/orHuman Potential Movements.[129][130][131][132][133][134][135][136][137][138] Medical anthropologist Jean M. Langford categorizes NLP as a form of folk magic; that is to say, a practice with symbolic efficacy—as opposed to physical efficacy—that is able to effect change through nonspecific effects (e.g., placebo). To Langford, NLP is akin to a syncretic folk religion "that attempts to wed the magic of folk practice to the science of professional medicine".[139] Bandler and Grinder were (and continue to be[140][141]) influenced by the shamanism described in the books of Carlos Castaneda. Several ideas and techniques have been borrowed from Castaneda and incorporated into NLP including so-called double induction[39] and the notion of "stopping the world"[142] which is central to NLP modeling. Tye (1994)[127] characterizes NLP as a type of "psycho shamanism". Fanthorpe and Fanthorpe (2008)[143] see a similarity between the mimetic procedure and intent of NLP modeling and aspects of ritual in some syncretic religions. Hunt (2003)[129] draws a comparison between the concern with lineage from an NLP guru—which is evident amongst some NLP proponents—and the concern with guru lineage in some Eastern religions.

In Aupers and Houtman (2010)[133] Bovbjerg identifies NLP as a New Age "psycho-religion" and uses NLP as a case-study to demonstrate the thesis that the New Age psycho-religions such as NLP are predicated on an instrinsically religious idea, namely concern with a transcendent "other". In the world's monotheistic faiths, argues Bovbjerg, the purpose of religious practice is communion and fellowship with a transcendent 'other', i.e. a God. With the New Age psycho-religions, argues Bovbjerg, this orientation towards a transcendent 'other' persists but the other has become "the other in our selves", the so-called unconscious: "[t]he individual's inner life becomes the intangible focus of [psycho-]religious practices and the subconscious becomes a constituent part of modern individuals' understanding of the Self." Bovbjerg adds, "[c]ourses in personal development would make no sense without an unconscious that contains hidden resources and hidden knowledge of the self." Thus psycho-religious practice revolves around ideas of the conscious and unconscious self and communicating with and accessing the hidden resources of the unconscious self—the transcendent other. According to Bovbjerg the notion that we have an unconscious self underlies many NLP techniques either explicitly or implicitly. Bovbjerg argues, "[t]hrough particular practices, the [NLP practitioner qua] psycho-religious practitioner expects to achieve self-perfection in a never-ending transformation of the self."

Bovbjerg's secular critique of NLP is echoed in the conservative Christian perspective of the New Age as represented by Jeremiah(1995)[144] who argues that, "[t]he ′transformation′ recommended by the founders and leaders of these business seminars [such as NLP] has spiritual implications that a non-Christian or new believer may not recognise. The belief that human beings can change themselves by calling upon the power (or god) within or their own infinite human potential is a contradiction of the Christian view. The Bible says man is a sinner and is saved by God's grace alone."

The quasi-religiosity of New Age belief and practice—even to the extent of "self-improvement" technique—was affirmed in a series of US court cases brought by employees against their employers whom mandated corporate New Age training. The plaintiffs claimed that these trainings conflicted with their religious beliefs.[145][146] On this subject, Young—in Heuberger and Nash (1994)[147]—specifies, "uch New Age methods include meditation, yoga, biofeedback, centering, guided visualizations, affirmations, Akido-based exercise [sic], self-hypnosis, fire walking, and Neuro-Linguistic Programming (NLP)".

THIS NEW FORM WAS CREATED BECAUSE THEY FOUGHT OVER THE OLD COPYRIGHTS.... YOU MUST BE CERTIFIED WITH THEM TO USE THIS THERAPY and you pay I beleive each year to stay current.... LIKE A FRANCHISE!!!!!
Intellectual property disputes
By the end of 1980, the collaboration between Bandler and Grinder ended.[41] On 25 September 1981, Bandler instituted a civil action against Grinder and his company, seeking injunctive relief and damages for Grinder's commercial activity in relation to NLP. On 29 October 1981, judgement was made in favor of Bandler.[148] As part of a settlement agreement Bandler granted to Grinder a limited 10-year license to conduct NLP seminars, offer certification in NLP and use the NLP name on the condition that royalties from the earnings of the seminars be paid to Bandler. In July 1996 and January 1997, Bandler instituted a further two civil actions against Grinder and his company, numerous other prominent figures in NLP and 200 further initially unnamed persons. Bandler alleged that Grinder had violated the terms of the settlement agreement reached in the initial case and had suffered commercial damage as a result of the allegedly illegal commercial activities of the defendants. Bandler sought from each defendant damages no less than US$10,000,000.00.[149][150] In February 2000, the Court found against Bandler, stating that "Bandler has misrepresented to the public, through his licensing agreement and promotional materials, that he is the exclusive owner of all intellectual property rights associated with NLP, and maintains the exclusive authority to determine membership in and certification in the Society of NLP."[151][152]

On this matter Stollznow (2010)[21] comments, "ronically, Bandler and Grinder feuded in the 1980s over trademark and theory disputes. Tellingly, none of their myriad of NLP models, pillars, and principles helped these founders to resolve their personal and professional conflicts."

In December 1997, Tony Clarkson instituted civil proceedings against Bandler to have Bandler's UK trademark of NLP revoked. The Court found in favor of Clarkson; Bandler's trademark was subsequently revoked.[153][154]

By the end of 2000, Bandler and Grinder entered a release where they agreed, amongst other things, that "they are the co-creators and co-founders of the technology of Neuro-linguistic Programming" and "mutually agree to refrain from disparaging each other's efforts, in any fashion, concerning their respective involvement in the field of NeuroLinguistic Programming." [155]

As a consequence of these disputes and settlements, the names NLP and Neuro-linguistic Programming are not owned by any party and there is no restriction on any party offering NLP certification.[156][157][158][159][160]

Associations, certification, and practitioner standards
The names NLP and Neuro-linguistic Programming are not owned by any person or organisation, they are not trademarked intellectual property[161][162] and there is no central regulating authority for NLP instruction and certification.[160][163] There is no restriction on who can describe themselves as an NLP Master Practitioner or NLP Master Trainer and there are a multitude of certifying associations;[112] this has led Devilly (2005) to describe such training and certifying associations as granfalloons, i.e. proud and meaningless associations of human beings.[19]

There is great variation in the depth and breadth of training and standards of practitioners, and some disagreement between those in the field about which patterns are, or are not, actual NLP.[18][164] NLP is an open field of training with no "official" best practice. With different authors, individual trainers and practitioners having developed their own methods, concepts and labels, often branding them as NLP,[57] the training standards and quality differ greatly.[165] In 2009, a British television presenter was able to register his pet cat as a member of the British Board of Neuro Linguistic Programming (BBNLP), which subsequently claimed that it existed only to provide benefits to its members and not to certify credentials.[166]

You can tell this pisses me off.... Kaiser had me to 1 year out patient intensive therapy after my open heart as they misdiagnosed my ME/CFS for 9 years. then they placed me to for two years in stroke rehab for cognitive issues when it was ME/CFS..... The therapy helped me grieve the life I lost, accept the changes but IT IS NOT A TREATMENT FOR ME/CFS! Can u see why I am mad at this nonsense...
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think the immune side of CFS, the autonomic and sleep. If they tests this things, they will find abnormalities and the patient will have better chance of being taken seriously, also the things that can improve the most quality of life.

I have been asked by people being tired (a chrons patient, others... anybody w fatigue now think is cfs ), how do I know if I have CFS or not: here is my simple answer : when you exercise or overdo do you feel worse intimidate?, how do you feel the next 3 days??? The answer is I feel better when I exercise, even on Fibro(only) people that had ask me feel better if they exercise.

Your post just gave me a thought. Maybe they should change ME/CFS, to being called "exercise intollerance disease" instead. That way people would probably be far more understanding and I would guess then would get the idea.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Jeanette Burmeister- Thougths about ME

IOM Meeting? participate at your Own Risk:

http://thoughtsaboutme.com/2014/04/01/iom-meeting-open-participate-at-your-own-risk/
Excerpt:
"Before people get too excited about the that parts of the meeting are open to the public, let’s be clear that the IOM’s understanding of what constitutes a public meting is peculiar at best. There will be no opportunity for the public to participate in the meeting, other than for a few pre-selected and invited speakers. They can hardly be considered “the public.” The public is only welcome to attend the meeting in person (up to a very limited number of people) and via webcast, but there won’t be an open mic for comments or questions and dissenting opinions by the public will definitely not be allowed."

People maybe should protest outside about us still wanting the CCC.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Regarding the speaker Megan Arrol of the UK, Tate Mitchell posted the following on co-cure:

As this meeting is covering both CFS people and ME people.. I guess they need to include ones like her beliefs too as some CFS people (not ME) are helped by this. This is why I was entirely against this IOM bullshit from the start.. they cant lump these two illness together and then try to discuss suitable treatments.

Note.. how much time is devoted to Megan Arroll compared to the others speaking. They have given her more time then the other two.
Megan gets 45mins
Leonard Jason gets 30mins
Akifumi Kishi (whoever he is) gets 30mins.

Dont expect them to change things like this..we can expect more focus on CFS then for ME or should I say more time and focus given on CBT and GET then anthing else (this whole thing was rigged from the start, they will bury ME in with the CFS like they've done for the past 30 years).

I honesty think we are so so screwed at this point. There should of been HUGE protests to stop this IOM thing before it started.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
yes. I realize that would be difficult because this is the IOM forum, but I do wonder about announcing on the world wide web, all aspects of what we would like to say

Im sure certain people you may not want to read this.. are probably already following this thread and will just follow it elsewhere. No doubt the PR IOM forum is being watched.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
for anyone struggling to get throu Lartista's long Lightnning Process post on Phil Parker, Ive picked out the important parts.

Four issues were investigated of which two were Upheld and two were Not upheld.

1. Upheld

We considered that visitors to the website were likely to understand from the statements such as "I hope these pages will answer some of your questions about this illness [CFS/ME] and about the Lightning Process (LP)", "Our survey found that 81.3%* of clients report that they no longer have the issues they came with by day three of the LP course" and "Due to the nature of the training the Lightning Process cannot guarantee results as everyone is different, however we have received a considerable amount of positive feedback from clients with the varied symptoms that many people with chronic health issues experience" that the symptoms of their CFS/ME were likely to be gone by the end of the three-day LP course and that they would have gained the knowledge to help them prevent those symptoms returning (with support from time to time from their LP practitioner).

Although we acknowledged that self-assessment questionnaires were commonly used to assess outcome measures in trials relating to CFS/ME, we noted that the LP Outcome Measures Study was not controlled and had been designed only to provide preliminary outcome measures which could be used to support an application for funding for a larger-scale randomised control trial (RCT).

Although we had not seen the full study, we understood that the pilot study conducted with the International Centre For Wellness Research reported positive results from a sample of 17 participants. However, we understood that the study was not controlled and had concluded that further investigation was necessary, with a larger sample size with wider inclusion criteria.

We had seen only a summary of the LP Snapshot Survey. We had no reason to doubt the accuracy of the reporting. However, we noted that participants need only have been self-diagnosed to participate in what was a self-assessment survey which was not controlled. Similarly, we noted that the trials conducted by the ME Association, the Brighton and Sussex Medical School and the Sussex & Kent CFS/ME Society reported positive results but were self-assessment studies and had not been controlled.

We considered that those studies and surveys did not constitute a suitably robust body of evidence to demonstrate the effectiveness of the LP in the treatment of CFS/ME. Because of that, we concluded that the CFS/ME page of the website was likely to mislead.

On this point, the website breached CAP Code (Edition 12) rules 3.1 (Misleading advertising), 3.7 (Substantiation) and 12.1 (Medicines, medical devices, health-related products and beauty products).

The other thing that was upheld was the claims on it helping MS, IBS/digestive issues, food and chemical intolerances, eating disorders, addiction, depression, FM/chronic pain, phobias/anxiety/stress, low self-esteem and OCD which got dismissed for the same reasons of the studies not being good enough, not controlled and small... the findings were

On this point, the website breached CAP Code (Edition 12) rules 3.1 (Misleading advertising), 3.7 (Substantiation) and 12.1 and 12.2 (Medicines, medical devices, health-related products and beauty products).
Action The claims on the website should not appear again in their current form. We told Phil Parker Group to ensure they did not make medical claims for the LP unless they were supported with robust evidence. We also told them not to refer to conditions for which advice should be sought from suitably qualified health professionals.
 

lartista

Senior Member
Messages
139
An update...

We've been doing some research on Megan Arroll in the group that I've just set up, and I couldn't find any unreasonable quotes directly associated with her.

It seems that she has been the research director, at the Optimal Health Clinic, but we're not sure if she still works for them.

I also haven't been able to directly associate her with any of the promotional material on the Optimal Health Clinic website. (A research director doesn't necessarily agree with everything written on her employer's website.)

I've found two research papers, by Megan Arroll, which I've posted above, which I thought were both fairly reasonable, and sensibly written, even if I don't agree with the need to research psychological treatments in relation to ME. The papers don't make any outrageous or exaggerated claims. I actually found it difficult to find anything that I objected to, except for the general suggestion that psychological treatments may help improve physical functioning in ME (there's very little general evidence to support this.) The discussions were not over-spun, and any claims were very conservatively and cautiously worded. In the most controversial content of one of the papers - a discussion about EFT and NLP etc. - it was claimed that these therapies are intended 'primarily' to treat anxiety associated with chronic illness. (Although, perhaps that's a bit slippery.) Further discussions in the paper go on to discuss improvements in ME after these treatments, but I didn't read any outlandish or offensive claims. Perhaps if I read the paper in more detail, then I might be able to find something that I found offensive.

The general suggestion, that psychological interventions can improve physical function in ME, is obviously problematic, but the paper does not make the exaggerated and problematic claims that other psycho-social research makes with regards to psychological interventions being a treatment or cure for ME or CFS. The papers include sensible discussions about the nature of the illness.

A new paper, that has been posted above, seems positively helpful. Except that I've only read the abstract.

The new paper discusses "proinflammatory cytokines" which can "lead to significant impairments in cognition..."
And it goes on to say that "fatigue and depression may be a result of the neurobiological effects of ME/CFS and in addition, that the neurobiological effects of the illness may give rise to both fatigue and cognitive deficits independently."
So, unless I've missed something, I don't personally have a major problem with Megan Arroll.
But I do have a problem with the IOM not inviting one of the many other researchers who are firmly planted in biomedical research.

http://www.uel.ac.uk/psychology/staff/meganarroll/
 
Messages
15,786
Megan Arroll is currently the Director of Research for The Optimum Health Clinic which provides interventions for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related disorders.
http://www.uel.ac.uk/psychology/staff/meganarroll/

DOES THAT HELP? SHE IS THEIR RESEARCH DIRECTOR....
Not really. On the OHC site at http://freedomfromme.co.uk/history/ it says that she was there until October 2013. The UEL description is likely out of date.
 

Bob

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Bob said:
It seems that she has been the research director, at the Optimal Health Clinic, but we're not sure if she still works for them.

I also haven't been able to directly associate her with any of the promotional material on the Optimal Health Clinic website. (A research director doesn't necessarily agree with everything written on her employer's website.)
Megan Arroll is currently the Director of Research for The Optimum Health Clinic which provides interventions for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related disorders.
http://www.uel.ac.uk/psychology/staff/meganarroll/

DOES THAT HELP? SHE IS THEIR RESEARCH DIRECTOR....
Thanks. As Valentijn says, this might be out of date.

But also, there is a distinction to be made between the opinions of an employer and the personal opinions of an employee.
'Research director' isn't the same as 'director' of a company.