CAA recommends, to me, questionable article on pacing. March 2010

[Dr. Yes]

CAA please EXPLAIN

Alex Howard is a self-described (former) ME sufferer who made a full recovery and became a psychologist, then founded the "Optimum Health Clinic".

I took a look at their website ( http://www.freedomfromme.co.uk/index.html ... note the name!) which provides a good deal of information about their approach, and I think the CAA has a lot of explaining to do.

First, some background from that website:

The approach of the clinic has been to systematically study and research every possible helpful treatment, and pull together an integrated treatment approach that can specifically be tailored to the individual needs of each patient.

By "integrated" they don't mean allopathic with alternative, as we do in the States.. they mean psychological with nutritional. Apparently "every possible helpful treatment" includes variations on NLP, the Lightning Process, EFT and hypnotherapy, along with nutritional protocols that address heavy metal toxicity and Candida... but it does NOT include any treatment for viral or other pathogens:

From an interview with Alex Howard:

Q: In your list of things that cause ME you don’t mention viral infections so do you believe ME can be caused by illness?

A: Definitely – but there have been no consistent findings in this area (and we don’t believe there ever will be) of a single virus in everyone which is having a causal effect. And remember chronic mental or physical stress (amongst other things) could be the underlying cause of the virus because stress lowers immunity and can allow an opportunistic infection to take hold.

Also from this interview:

I suffered for M.E. for seven years from age 15-22. For the first two years of this I was virtually bed-bound, and then after deciding to spend every ounce of energy I had searching for answers, I gradually improved as I came across the various things that worked for me personally. During this period I saw over 35 different practitioners, read over 500 books [Ed: a stunning achievement...] in related areas and undertook numerous training courses.

During the latter part of my illness I was able to go to university and study psychology, and during my final year at University I did a great deal of training in hypnotherapy, NLP and life coaching (including a practitioner training course with Phil Parker who also created The Lightning Process). At the end of my training Phil invited me to work with him at his clinic where he was treating issues such as stress, anxiety, depression, phobias and problems quitting smoking etc. During this period I completed work on my book “WHY ME? My Journey from M.E. to Health and Happiness.”

His book was the one that (in his own words): "first put the Lightning Process on the map for treatment of ME", though he now says it is one facet of a proper ME treatment.

From their website:

M.E. is after all a very real physical illness. However, it is also unquestionable that psychology based techniques such as those we have been pioneering in the clinic can have dramatic effects with M.E. patients. Our approach as a clinic has been to consistently study and research all of the various treatment approaches available with the goal of creating the most integrative and effective protocol available. Some of the approaches that have influenced our protocol include:

• The Lightning Process
• Reverse Therapy
• Emotional Freedom Technique (EFT)
• CBT
• Neuro-Linguistic Programming
• The Enneagram
• Life Coaching
• Hypnotherapy and self-hypnosis

Also from their website (bolding is mine):

OUR CORE BELIEFS ARE:

* Every case of M.E. is different, and therefore requires individual attention and investigation

* Full recovery is totally achievable and the role of any helping professional should be that of providing inspiration as well as education

* Healing must take place on all levels, mental, emotional, physical and spiritual – the inter-relationship and importance of each of these facets is different in every person

From Alex Howard in third video on their site at: http://www.freedomfromme.co.uk/psychologyvideos/patient.html:

"The second thing we're looking at is dealing with our emotional background.. we're talking about our predisposing factors - these are our achiever tendencies, or our helper tendencies.. almost like the behaviors that were there in the first place, which then led in time to the development of ME."

To the CAA: Does the CAA support the views expressed in the article by Alex Howard you linked to (and quoted by cfs since 1998 in post #2 of this thread) or the views expressed by Howard above? If so, would the CAA kindly make this clear on the top of their home page and in mailings to all its members? If NOT, why was this article linked to at all? Does the CAA newsletter have no editors?? And will the CAA question the author of this piece of the newsletter to find out why s/he found such an article in any way appropriate for promotion? And, of course, will the CAA then issue a retraction statement, to all those who received this newsletter and on their website, regarding their link to the Howard article?

 

[flybro]

Originally Posted by sarahg
If the CAA were to do one thing that would revolutionize the opinion that some patients hold about them- All you have to do is START ADVOCATING FOR THE SICKEST PATIENTS, and stop advocating for only the healthiest patients. Instead of a tiny footnote in the end of articles that says, well yes there are some people that are bedbound and this does not apply to them- advocate for THESE people, these are the people that need your help,these are the people in desperate need of accurate information, these are the people you need to focus on, these are the people who will change public opinion about this disease. It's really that simple.

I completeley agree Sarah, and on a purely selfish note, I want them to find out how to help the severely disabled ppl with ME CFS because I am worried I may one day be them.

If I knew that bio-medical research studies were being carried out on these patients then I owuld beleive that the powers that be are doing everything in there power to protect me from it.

While they continue to ignore the severely ill, and continue to impose CBT and GET on the rest of us, they are insuring that the numbers of ppl severley ill with ME CFS increase.

 

[leelaplay]

To the CAA: Does the CAA support the views expressed in the article by Alex Howard you linked to (and quoted by cfs since 1998 in post #2 of this thread) or the views expressed by Howard above? If so, would the CAA kindly make this clear on the top of their home page and in mailings to all its members? If NOT, why was this article linked to at all? Does the CAA newsletter have no editors?? And will the CAA question the author of this piece of the newsletter to find out why s/he found such an article in any way appropriate for promotion? And, of course, will the CAA then issue a retraction statement, to all those who received this newsletter and on their website, regarding their link to the Howard article?

Way to go everyone. Very nice points Dr Yes.

We have to make sure that this dangerous nonsense is not propagated by the CAA as having any validity. They need to make their position clear to all members. They need to withdraw this article. They need to issue a retraction statement.

I think we each have to write to the CAA and let them know our outrage that they would be recommending such dangerous false claptrap.

ok - I'm off to write my email to them.

arggghhh

Oh - and think I'll find the CAA thread and ask Jenny for her response to this debacle.

 

[Lily]

I wonder if they'd comply with a request for a REFUND?????

 

[garcia]

If the CAA were to do one thing that would revolutionize the opinion that some patients hold about them- All you have to do is START ADVOCATING FOR THE SICKEST PATIENTS, and stop advocating for only the healthiest patients. Instead of a tiny footnote in the end of articles that says, well yes there are some people that are bedbound and this does not apply to them- advocate for THESE people, these are the people that need your help,these are the people in desperate need of accurate information, these are the people you need to focus on, these are the people who will change public opinion about this disease. It's really that simple.

Brilliant post Sarah! Instead of advocating for the sickest, a lot of our advocacy groups seem to advocate for the least sick. That is true on this side of the pond too.

 

[CBS]

To the CAA: Does the CAA support the views expressed in the article by Alex Howard you linked to (and quoted by cfs since 1998 in post #2 of this thread) or the views expressed by Howard above? If so, would the CAA kindly make this clear on the top of their home page and in mailings to all its members? If NOT, why was this article linked to at all? Does the CAA newsletter have no editors?? And will the CAA question the author of this piece of the newsletter to find out why s/he found such an article in any way appropriate for promotion? And, of course, will the CAA then issue a retraction statement, to all those who received this newsletter and on their website, regarding their link to the Howard article?

I would add that given the commercial nature of the link to Alex Howard's site; what are the nature of any and all CAA financial ties to Mr. Howard or FreedomFromME.com?

Response from JSpotila in post #100 of this thread (Thank you):

I wanted to double-check before posting this to ensure that it is completely 100% accurate: the Association has no financial relationship with, nor derives any benefit from, Mr. Howard or his clinic. The Association has published a great deal of material by a number of practitioners, including the January webinar by Dr. Cindy Bateman, without having a financial relationship with any of them.

 

[flybro]

Be Worried this from our National Health Service

the AFME is one of our national (and i think they get government funding) advocacy groups. I think it is the group for support young people and children.

http://www.afme.org.uk/res/img/resources/RCT on LP March 2.pdf

164,000 awarded for new research into the treatment of a chronic
childhood condition​

A research study looking into interventions and treatment options for a chronic
childhood condition has been awarded funding of 164,000 by the Linbury Trust and
the Ashden Trust.
The funding has been awarded to a research team led by Dr Esther Crawley,
Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases NHS
Foundation Trust, also known as the Min, and Senior Lecturer at the University of
Bristol.
Esther and her team will carry out a pilot project to investigate whether it is possible
to look at two different approaches to the intervention and treatment of Chronic
Fatigue Syndrome/ME (CFS/ME) in Children.
CFS/ME in children is a relatively common and potentially serious condition affecting
over one per cent of children across the UK. Over 50 per cent of affected children are
bed bound at some stage of their illness and have an average time off school of one
academic year.
Despite this there is a limited evidence-base for treatment for children with CFS/ME.
This research also incorporates the first study on health economic cost of this
condition in children.
Dr Esther Crawley said:
We are delighted to have been awarded this research grant. CFS/ME can have a
profound impact on a childs life. We hope that our research will enable us to
understand more about this condition and how we can help those children who suffer
with it.
The team will carry out a pilot project to investigate how to recruit to a randomised
controlled trial looking at the Phil Parker Lightning Process​

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​

and specialist medical
care. This will be the first study of its kind in this area, and the team hopes to
establish a basis for a larger scale multicentre research project.
The specialist Paediatric CFS/ME service at the Min is the largest regional paediatric
CFS/ME clinical service in the UK, and also provides services nationally. The team
currently provides assessment and treatment for over 200 children from across the
UK and Western Europe each year. Approximately ten per cent of the children
referred into the service are housebound and are assessed at home.
The Phil Parker Lightning Process is an intervention that is used for a variety of
conditions including CFS/ME and has been developed from osteopathy, coaching
and neuro-linguistic programming. It is a three-day training programme run by
registered practitioners and designed to teach individuals a new set of techniques for
improving life and health.
Phil Parker, designer of the Lightning Process said:
We are thrilled to have the opportunity to collaborate on this exciting and
groundbreaking research with Dr Crawley and her team. It is vitally important that all
interventions that could assist children with CFS/ME to return to school and improve
their health are explored. We hope that this study is successful and leads to further
research collaborations between the Lightning Process and specialist teams like
Esthers.
The study will involve in depth interviews with the patients and their parents, and the
primary outcome measure will be school attendance after six-months. It is hoped that
over 90 children aged between eight and 18 and their families will be involved in the
study. They will be recruited after assessment by the specialist team at the Min.
The study will begin in September 2010.
ENDS
Press contact: Emma Mooney, Marketing & Communications Manager RNHRD
01225 465941 ext 211 emma.mooney@rnhrd.nhs.uk​

Notes for Editors:​

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The RNHRD NHS FT is a national specialist rehabilitation and rheumatology
hospital based in bath. Offering services to adults, children and young people the
Trust has expertise in general and complex:​

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Rheumatological and musculoskeletal conditions​

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Neurological rehabilitation​

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Chronic pain management​

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Chronic Fatigue Syndrome/ME​

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www.rnhrd.nhs.uk​

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Phil Parker Lightning Process http://www.lightningprocess.com​

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Linbury Trust: http://www.linburytrust.org.uk/​

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Ashden Trust: http://www.ashdentrust.org.uk/​

​

The University of Bristol is internationally distinguished and is ranked
among the leaders in UK higher education. Research-intensive, with an
international reputation for quality and innovation, the University has
17,000 students from over 100 countries, together with more than 5,500​

staff. For further information, see www.bris.ac.uk

http://forums.aboutmecfs.org/showth...n-effectiveness-of-Lightning-Process-to-begin this where this article is being discussed.

 

[jspotila]

The earlier forum discussion of Alex Howard's material was completely different in tone from this one. From what I've read, both Alex Howard and Bruce Campbell place the patient in the driver's seat to determine the pacing. The horror stories that many patients tell come from situations where healthcare providers and/or other caregivers do NOT place the patient in the driver's seat. Screaming at someone to get out of bed is never good. We're sick, not Marine recruits. As I have in the past, I will pass the questions/concerns expressed thus far in this thread to the staff.

 

[PoetInSF]

I find a fault in this article from the opposite direction. The adaptive pacing that the author is advocating is not clinically tested or proven to achieve the stated goal of:

What we are trying to AVOID is CHRONICALLY OVER or UNDER-doing activity levels

It is only an ad-hoc management of activity levels based on subjective stages of sickness. And I maintain that the best way to avoid chronic over/under-doing is through disciplined regular program strictly by the numbers.

I think CAA should stick to the mainstream recommendation of activity management that the author criticizes.

 

[Dr. Yes]

Perhaps there is a link between the facts that the CAA does not advocate for severely ill patients, that they do not address these patients proportionately to their demographics, that they promote CBT and GET, that they somehow featured Peter White in a previous pamphlet to physicians, that they now somehow recommend the article and psychologist in question here, and that Dr. Vernon of the CAA does not seem to see a problem with the Oxford criteria being used to select patients for the Dutch XMRV study??

To me this suggests a possible (and disturbing) ideological link.

 

[Sparklehorse]

Alex Howard is notorious in the UK. How sad that the CAA and it's defenders on here have fallen for the money-making scam con that it is. It's in the same league as the Lightning Process and all of it's imitators. What a massive own goal for all concerned but maybe it's showing the truth about this organisation and it's defenders and supporters on here. CAA equals joke as far as I'm concerned. You sound EXACTLY like the UK's AfME ,and believe me, that's disasterous for all true ME/CFS patients in the USA. I think you'll all find that your biggest ME/CFS organisation have just shown their true colours.

 

[CBS]

Perhaps there is a link between the facts that the CAA does not advocate for severely ill patients, that they do not address these patients proportionately to their demographics, that they promote CBT and GET, that they somehow featured Peter White in a previous pamphlet to physicians, that they now somehow recommend the article and psychologist in question here, and that Dr. Vernon of the CAA does not seem to see a problem with the Oxford criteria being used to select patients for the Dutch XMRV study??

To me this suggests a possible (and disturbing) ideological link.

If this is the case, then I am left with the inescapable question, as my CFS has severity has increased over the past 4 years, does the CAA represent me (and eventually, how many others will find that they are also not being represented)?

 

[anne]

Jennie, thank you, as always. for listening. I think the problem is that article does not truly put the patient in the driver's seat, but implies that they are cognitive/psychological factors that might contributing to the inability to be active. And that is deeply unhelpful to people who constantly have to tell their medical providers that they only go and get the mail every day because it's all they can do.

What I'm suggesting is a Marine Recruit standard: Could anything we're publishing be seen by someone who suspects there is a psychological/deconditioning aspect to this disease as affirming that point of view? Could anything in anything we're publishing be waved in front of a bedridden CFS patient's bedside by ignorant caregivers with no understanding of nuance?

And also an attention to what sort of experts we're consulting in the first place. When the pamphlets are filled with infectious disease doctors and virologists and neurologists, it says something very different than when we're consulting psychiatrists and hypotherapists.

How is everything going to be read by people who think this illness isn't real? Or by doctors who don't understand it and wonder if there's a psychological component? Everything the CAA produces should be viewed from that lens.

 

[Dr. Yes]

The earlier forum discussion of Alex Howard's material was completely different in tone from this one.

That is because the earlier discussion managed to completely miss the major issues brought out in this thread.

From what I've read, both Alex Howard and Bruce Campbell place the patient in the driver's seat to determine the pacing.

Again, please refer to the Howard's article on pacing, or to the excerpts from it in post #2 and others in this thread, to see the extremely disturbing ideological (not scientific) basis of their psychological approach to "ME".

Screaming at someone to get out of bed is never good. We're sick, not Marine recruits.

Yes, I know. We also didn't make ourselves sick with our pre-illness behavioral patterns, nor are our "false illness beliefs" the major (or any) obstacle to our "recovery". So why did the CAA link to an article/psychologist who claims that these are true?

As I have in the past, I will pass the questions/concerns expressed thus far in this thread to the staff.

Thank you... but I continue to wonder why the heck you should have to do that in the first place. And these are concerns - especially those first raised on this thread by Sarah G - that have been raised elsewhere, on and especially off this forum, many times in the past to the CAA.

 

[oerganix]

Perhaps there is a link between the facts that the CAA does not advocate for severely ill patients, that they do not address these patients proportionately to their demographics, that they promote CBT and GET, that they somehow featured Peter White in a previous pamphlet to physicians, that they now somehow recommend the article and psychologist in question here, and that Dr. Vernon of the CAA does not seem to see a problem with the Oxford criteria being used to select patients for the Dutch XMRV study??

To me this suggests a possible (and disturbing) ideological link.

This idea certainly has occurred to me, also. That Dr Vernon was at CDC for so long, 10 years supposedly working on CFS, and has her name of many of Reeves' papers, along with her tepid response to the Wessely/McClure sanctioned papers in UK, makes me wonder what she really believes.

 

[Roy S]

It's good to see people speaking out strongly about long standing problems at the CAA even though the stress is bad for patients.

 

[Cort]

Over the past two years I have benefited SUBSTANTIALLY from using many of these techniques.

The CAA looks at all aspects of this illness: from meditative/mindfulness/pacing techniques (you actually don't like pacing?) to doing cutting edge research on mitochondrial problems in the brain, gut metabiome issue and vascular and pathogen issues. They never have never funded a single behavioral study and they took the CDC to task for starting to fund CBT research.

There are people on these forums who have benefited from LP, from Amygdala retraining and EFT etc..

If that kind of multidimensioinal approach to this multidimensional disorder doesn't work for you then fine state that you're only interested in one approach to CFS - but its very unfair to state that the CAA advocates one approach to this disorder - its simply not true.

They've funded more pathogen research into CFS than any other organization by far - and that include the WPI. One study they're funding is on endogenous retroviruses in CFS. Another is looking at the micro-organism in the gut.

Its a very difficult subject and the CAA is caught in something of a bind here. If the autonomic nervous system and HPA axis are screwed up in CFS then patients should be able to benefit from techniques that reduce the stress levels in the body - and that includes some of these techniques. It makes sense and it does help people. Should the CAA ignore that because its not politically correct?

 

[Cort]

I honestly can't believe that Peter White is still being used as a stick to beat up the CAA. What about all the other physicians on that page? What Dr. Peterson being on there? Doesn't one Dr. Peterson wipe out one Peter White -which would leave, what, 7 or 8 other non-behavioral, presumably acceptable practices on that treatment page? Behaviorists surely must think the CAA is severely under representing their class. And they really are given how much CBT research there's been.

the facts that the CAA does not advocate for severely ill patients, that they do not address these patients proportionately to their demographics,

What do you mean by this? Why would you say that the CAA does not advocate for severely ill patients? They're advocating for all patients. Should they have a separate advocacy sections for people with more minor symptom, more moderate symptoms and more severely ill symptoms? Just how would you go about doing this?

Would you say to federal officials "now I'm advocating for severely ill patients?".

Are you saying that they don't mention severely ill patients - that they avoid them?

 

[Cort]

Two years ago I wouldn't have said this but two years after starting the Amygdala Retraining technique and using several other techniques, including one I dreamed up on my own , its really clear that, at least for me, that an overactive stress response is very, very important part of my illness. I realize that that's not true for everybody. It could be that I fit just one subset but I'm pretty sure that I'm not alone

I have believe my body overreacts to everything; from odors to light to sounds, and yes to negative thoughts. Many times those thoughts have nothing to do with CFS or my beliefs about my body or my illness; they are just negative thoughts - but I can tell that these negative triggers have a radical effect on my physiology; my breath shortens, my muscle constrict, my body sensations heat up...... my feeling is that I have been on the verge of toppling into a 'stress response' or basically in one for decades.

Since many of these things are able to quiet down the body and let it heal they've helped me greatly. I recognize that they may not help everyone as much as I. (I would also point out that I've been doing them for two years now.)

I didn't start to be a restless, anxious person - something happened. I still don;t know what it is. One study showed that gastrointestinal problems can cause increased anxiety and restlessness. That could be it. (The CAA is doing a gut biome study). I assume there are many ways to ties this all together and I think it will be tied together at some point.

Until then the CAA will have to walk a knifes edge between patients who can't stand this type of stuff and patients who do get some benefit from it.

 

[julius]

Cort, I agree with what you're saying. I think the CAA is right to cover many different avenues to address the many different manifestations of this disease. I'm not actually posting to get into this debate though. I just saw an incongruence in your last two posts and want to point them out, I think you must have mistyped something.

In post #38 you state "Check out Laurel's story on the CAA's site for evidence that they do not advocate for seriously ill patients. "

Then in post #39 you argue that they do advocate for seriously ill patients. "What do you mean by this? Why would you say that the CAA does not advocate for severely ill patients? They're advocating for all patients. "