Shooting Down the Top 10 Myths from the NHS Online Clinic

September 6, 2013

Valentijn sets her sights on the recent NHS ME/CFS and Fibromyalgia online clinic, and targets some of the myths that formed an albeit small part of the expert responses…

gunslinger

Shooting down some ME/CFS myths

Between August 14 and August 20, 2013 the National Health Service (NHS) in England hosted an online question and answer clinic in partnership with talkhealth

This clinic invited patients from around the world with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia to ask questions which were then answered by a panel of 10 experts who were all volunteering their time.  These questions and answers will now remain on the talkhealth site to be used as a resource for other ME/CFS patients seeking answers.

The panel of experts included some well-known and respectable medical professionals with a wide array of backgrounds and philosophies regarding ME/CFS and Fibromyalgia: Dr Charles Shepherd, Dr Alastair Miller, Dietician Sue Luscombe, Childrens’ Nurse Janey Readmen, Dr Caroline Grayson, Physiotherapist Jessica Bavinton, Welfare Rights Officer Sarah Lawrence, Health Author Wendy Green, Hypnotherapist Adam Eason, and Lindsey Middlemiss.

Together, the patients and experts produced in excess of 1100 posts in a 7 day period, a remarkable accomplishment in itself, and a new record for the NHS-talkhealth clinics.   A staggering 216 of those posts came from the sole efforts of Dr Charles Shepherd, Honorary Medical Adviser to the ME Association.  In addition to the scheduled experts, further information was contributed by three unannounced experts: PACE trial authors Professor PD White, Professor M Sharpe, and Professor T Chalder.

The Good:

The clinic was extremely popular – patients were thrilled to be getting answers to their specific and often difficult questions, resulting in a long thread consisting solely of patients thanking the experts.  Many expressed relief at getting validation from other patients regarding their experiences with both the disease and with skeptical or even adversarial health professionals.

Most participants seemed to find the clinic useful, and there were many calls for another such clinic to be hosted in the future.  There were also requests that the talkhealth site host an ME/CFS forum, as they already do for some other conditions, so that ME/CFS patients could continue to help and support each other there.

The Bad:

But not all went smoothly.  Threads were often locked immediately after expert answers were given, making it difficult for the patients to reply with further details about their situations, or to ask follow-up questions.  The site moderator claimed this was due to the high volume of questions and a need to focus on unanswered ones.

It was also shocking to see how many patients had been poorly treated by their doctors, with care often not even measuring up to the official recommendations of the National Institute for Health and Care Excellence (NICE).  A similar theme in the pediatric sections involved problems with schools failing to make appropriate accommodations for children with ME/CFS.  Patients in both the pediatric and adult sections also expressed many difficulties and failures they had experienced in regards to Graded Exercise Therapy (GET).

The Ugly:

Bum steer

It’s a bum steer…

Many patients expressed dissatisfaction with what seemed to be the deliberate lockdown of any patient feedback regarding controversial statements made by a few of the experts.  While there was perhaps a legitimate need to avoid prolonged conversations and advice from non-experts, the measures taken had a much bigger impact.

Some patient-created posts were edited to remove content, and others were deleted outright.  This seemed to happen primarily in the physical activity & exercise section, where there was the greatest divide between the expert’s opinion and patient experience.  In addition, the premature lockdown of threads prevented patients providing clarification regarding their initial question, or asking closely related followup questions.

Furthermore, questions and rebuttals containing any research were moved to a locked research & funding section, expressly reserved for inappropriate questions and complaints regarding research, funding, or the NHS itself.  This meant that experts could make uncorroborated or misleading claims about research without being contradicted, or having to explain themselves.

But ME/CFS patients are nothing if not persistent, and the questions regarding the basis for these questionable expert statements continued to be asked.  Eventually Dr Charles Shepherd issued a statement regarding evidence about GET and pacing in the physical activity & exercise section, indirectly challenging many of the statements made by physiotherapist Jessica Bavinton.  Dr Shepherd’s thread was quickly locked down and moved to the research & funding section, by then known as the place where difficult questions and evidence go to die.

Shortly before noon on Sunday, August 18th, the entire clinic was locked down, supposedly due to the “high volume of questions”.  When it opened again more than 24 hours later, a new message authored by Professor White, Professor Sharpe, and Professor Chalder had been added at the top of the clinic forum.  The title of this new message claimed that it was answering the patient questions which had been asked regarding GET, yet failed miserably to do so.  Instead it was an assurance of how safe and effective GET is, backed up by some misleading statistics.

The PACE trial authors did little to pacify the ME/CFS patients who were getting rather frustrated with their questions being deleted, edited, locked down, and/or moved to the research & funding section, rather than being answered with some sort of evidence.  Objections and contradictory data continued to pour in, now at the top of the main page of the clinic forum instead of in the physical activity & exercise section.

Unfortunately the shutdown resulted in a number of questions going unanswered, but ME/CFS patients need and deserve answers backed up by the best research available.  Accordingly, a list of the 10 most erroneous, harmful, and shocking myths propagated by a minority of the clinic experts are discussed below, as well as the evidence which calls those myths into question.

The Top 10 Myths, In Reverse Order….

Myth #10:  Everything in The Lancet can be trusted

Jessica Bavinton: “Nothing gets published in The Lancet unless it’s very rigorous and checked out thoroughly.”

It is indisputable that controversial papers have been published in The Lancet in the past, with content which was later seen to be less than trustworthy.  This casts considerable doubt upon the basic premise that everything in The Lancet has been thoroughly and rigorously reviewed.  The most famous example is the 1998 study by Andrew Wakefield suggesting a link between a vaccine and autism.

And for an example directly involving the PACE Trial, a successful complaint against the Lancet was brought before the Press Complaints Commission (PCC) by the Countess of Mar.  Regarding the report of a 30% recovery rate, the PCC found that “[t]he journal had failed to take care not to publish inaccurate or misleading information in breach of Clause 1 (i)”.  While this breach had already been corrected via the publication of an external letter addressing the point, the case illustrates that The Lancet can and does err.

It also illustrates the importance of carefully reading the entire publication, instead of relying on headlines and summaries, and the importance of permitting civil debate regarding publications.

Myth #9: TYMES Trust recommendations do not follow NICE guidelines

Dr Caroline Grayson: “I note that there has been previous recommendations to consult the TYMES Trust and I want to clarify that the recommendations from this organisation do not follow NICE guidelines and I do not endorse their approach”

This statement originated after the parent of a child asked for an expert opinion about his daughter, previously diagnosed with CFS, having that diagnosis removed by a pediatrician.  The child had been diagnosed with CFS several years earlier, but the pediatrician was now claiming that she had cured the child of her CFS, and what remained must be a dissociative disorder.  The parent was rather confused by this, as the child’s symptoms had not changed. 

Someone suggested contacting the Association for Young People with ME (AYME), and then someone else suggested the Tymes Trust when the father of the child responded that AYME was unhelpful in the past.

That is when the accusation was made that the TYMES Trust are not in line with NICE.  Unfortunately this is too large of a subject to explore completely, but Executive Director Jane Colby of the TYMES Trust came to the clinic to post a response, claiming that NICE had actually taken the advice of the TYMES Trust in its section regarding education and related issues for young ME/CFS patients.  Indeed, the sections (1.4.5.5 and 1.4.5.6) of the NICE ME/CFS Clinical Guideline relevant to children, seem to be very similar to what was being suggested by the TYMES trust.

While it is possible that there is some material elsewhere indicating a deviation from the NICE guidelines by the TYMES Trust, it is not readily apparent.  Furthermore, the expert did not specify what might be the specific subject of such a disagreement, despite being asked for clarification.  But if NICE has followed the recommendations of the TYMES Trust, it seems unlikely that any such a rift exists as was claimed by the expert.

Myth #8: Muscle function is normal

Jessica Bavinton: “However, once scientific studies have taken into account deconditioning and abnormal perception of effort, muscle function is in fact normal.”

This seems to be a common argument by those who favor psychological explanations and treatments for ME/CFS.   And, indeed, some studies have found that some aspects of muscle function are indeed normal for ME/CFS patients.  However there are many more studies which have repeatedly found indications of various abnormalities in the muscles of ME/CFS patients.

These abnormalities include excessive intracellular acidosis, Type II muscle fiber predominance, Type II muscle fiber dystrophy, muscle fiber necrosis, “bizarre tubular structures”, mitochondrial abnormalities, enterovirus RNA in skeletal muscle, decreased intracellular RNA suggesting “impaired capacity to synthesise muscle protein”, mitochondrial pleomorphism, and accelerated glycolysis.  Many of the authors of these studies have made statements indicating that these abnormalities are not compatible with deconditioning models.

Myth #7 : PACE shows that CBT and GET are as safe as pacing or standard specialist medical care

White, Sharpe, Chalder: “There were no significant differences in any of these safety measures across the four treatment arms”

This is somewhat difficult to answer, as the people making this claim have also been successfully fighting to withhold the deterioration data from the PACE trial since publication.  However, the initial results of the PACE Trial state that GET patients experienced significantly more Serious Adverse Events (SAE) than the patients in the pseudo-control group receiving only specialist medical care (SMC).  But the trial arms of the participants experiencing SAEs were then unblinded, allowing the researchers to determine if they felt that each SAE was related to the treatment, and thus constituted a Serious Adverse Reaction (SAR) to the therapy.  Rather oddly, at that point GET went from producing 2.4 times as many SAEs, when compared to SMC, to producing exactly the same number of SARs as SMC.

While there is a vague promise to eventually publish more detailed deterioration data in response to Freedom of Information requests, it is doubtful how useful that information will be.  Essentially PACE created two categories, one for SAEs, and one for non-serious adverse events (NSAE).  A sizable flaw is apparent with the definition of these categories: to qualify as an SAE there must be a death, hospitalization, or drastic decrease in condition lasting at least a month.  Everything else would be classified as an NSAE, ranging from feeling a little sore after exertion to being bedbound for several weeks.  Thus there is currently no way to know how many of  the CBT and  GET participants with NSAEs had multiple severe episodes of post-exertional malaise.

Fortunately the harmful effects of CBT and GET have been studied elsewhere, and illuminate the issue.  Tom Kindlon discusses the problems with the PACE Trial’s adverse events reporting in great detail in his Harms paper.  Dr Shepherd posted the results of a large ME/CFS patient survey at the clinic forum, which shows that 56.5% of respondents felt worse after GET, compared to 4.7% feeling worse after pacing.

Myth #6: Muscle pain is presumed to be harmless

Jessica Bavinton: “there is no evidence to suggest that the muscle pain associated with CFS/ME is as [a] result of any harm being done to the muscles themselves.”

A lack of evidence of harm is not evidence of a lack of harm.  Indeed many studies have found indications of potentially painful abnormalities in processes which might result in harm, and abnormalities in structures which might or might not have resulted in pain.

As a specific example, the expert’s claim can be disputed by a study conducted by Jammes, et al, which found “lengthened and accentuated oxidative stress” in ME/CFS patients after incremental exercise, compared to controls.  This oxidative stress could be responsible for both pain and cellular damage, which suggests that the muscle pain experienced by ME/CFS patients after exertion may very well not be harmless after all.

Myth #5: If you have any abnormal blood tests, you don’t have ME/CFS

Dr Caroline Grayson: “I am unsure what the specific abnormalities in your son’s blood tests are but for a diagnosis of CFS/ME there has to be no evidence of any other cause for the symptoms such as infection or inflammation.”

Dr Caroline Grayson: “I am unsure what the abnormalities are in your son’s blood tests are as I would expect that blood tests should be normal for a diagnosis of CFS/ME.”

It’s hard to imagine how such ignorance has managed to survive for so long, in a licensed ME/CFS pediatrician.  First of all, it should be obvious that there can be abnormalities in the case of co-morbid disorders.  This means that someone has two or more illnesses for the symptoms of ME/CFS.  A co-morbid illness would present symptoms separate from, and in addition to the symptoms of ME/CFS.  But the ME/CFS symptoms would remain after the other illnesses were successfully treated.

Then we have the thousands of research papers actually finding indications of various objective abnormalities in ME/CFS patients, a great many of them showing up in blood tests – albeit usually not the blood tests on the rather abbreviated list recommended by NICE.  Common issues pop up like vitamin D levels often getting low, possibly due to reduced exposure to UVB resulting from decreased mobility in housebound patients.  Hence when the side effects of being very disabled result in an abnormal blood test, it wouldn’t make much sense if the blood test excluded an ME/CFS diagnosis.

Now that we’ve covered the basics, let’s set down the Oxford Handbook for ME/CFS Denialism and look at some internationally recognized definitions of ME/CFS to see what they say about abnormal blood tests.  Even the Center for Disease Control (CDC) admits that there are comorbid diseases which ME/CFS patients are more likely to have, some of which are diagnosed by blood tests.  And if you look at the definitions favored by many ME/CFS patients and most experts, the Canadian Consensus Criteria (CCC) and International Consensus Criteria (ICC) primers each list dozens of common abnormalities, many of which are found via blood testing.

Myth #4: PACE shows that 60% of patients improve with CBT or GET

White, Sharpe, Chalder: “About six out of ten patients made a clinically useful improvement in both fatigue and functioning after CBT or GET.”

Unfortunately this is rather misleading.  While 59% of CBT patients and 61% of GET patients in the PACE Trial did give minimally better responses on two of the questionnaires used, so did 45% of the control group, which received only standard specialist medical care (SMC). 

Because the CBT and GET patients also received SMC, determining the rate of improvement solely attributable to GET and CBT requires an accounting of the rate of improvement attributed to the SMC-only group.  Therefore the improvement in only 14% of the CBT patients and only 16% of GET patients can be attributed solely to those therapies, after SMC is removed from the equation.

Another problem is that PACE used the Oxford definition of ME/CFS when recruiting patients. Because that definition only requires unexplained chronic fatigue for a diagnosis, it cannot be extrapolated that the PACE trial is applicable to ME/CFS patients as defined by more rigorous criteria.

It’s also important to note that the modest rate of “improvement” for chronic fatigue patients was completely subjective and quite small.  Instead of using objective measurements like actometers, a walking test, welfare benefits, or employment outcomes, the authors chose to rely solely on responses to questionnaires when determining improvement. 

And on those questionnaires, a difference of only two points was needed on one scale (range of 0-33), and 8 points on the other scale (range of 0-100).  Thus it would be much more accurate to say that CBT or GET results in about 15% of chronic fatigue patients saying that they feel marginally better after a year of treatment.

Myth #3: Muscle pain is due to deconditioning

Jessica Bavinton: “Muscle pain can be, as in your case, a significant issue for people with CFS/ME.  People tend to find it may have a generally constant impact, but gets worse: . . . When resting too much, or being ‘under-active’ as the muscles weaken considerably making it much harder to do things.”

As usual, this claim as applied to ME/CFS is a baseless theory favored by a small group of researchers.  From a patient perspective, it is generally easy to distinguish between ME/CFS muscle pain and the pain which comes after exerting muscles which have not been used recently.  The deconditioning pain is generally quite brief, localized, and even pleasant compared to the muscle pains caused by temporarily exceeding limitations or coming down with post-exertional malaise.  So although it is not disputed that deconditioning does cause pain when muscles are re-engaged, it is almost certainly not causing the chronic muscle pain most associated with ME/CFS.

Furthermore, some of the studies investigating muscle abnormalities have made discoveries which indicate an alternative and more plausible source for the cause of ME/CFS muscle pain.  One such study shows patient muscle cells producing 20 times as much lactic acid in vitro as the muscle cells of sedentary volunteers, an abnormality which has been observed repeatedly to some degree over the past few decades. 

Another study shows that ME/CFS patients have increased sensory, adrenergic, and cytokine gene expression corresponding with pain and fatigue after moderate exercise, compared to controls who had no such abnormalities.  There is no indication that all of these abnormalities can be attributed to deconditioning.

Myth #2: A child with ME/CFS who is having seizures primarily needs psychological treatment

Pediatric Medical Question: “He started having seizure-like episodes early in 2012, with whole-body convulsions etc. . . .”

Dr Caroline Grayson (entire initial response): “From your post I am unsure whether your son is accessing any specific psychological support with his symptoms. I have certainly seen similar presentations in young people and in these cases I have sought psychological support.”

Although the expert did eventually qualify her initial statement after it generated considerable outrage, it is still incomprehensible that the first reaction to someone asking about convulsions is to suggest psychotherapy.  Exactly what does this expert think that ME/CFS is?

Even NICE (1.2.1.4) concedes that: “[s]igns and symptoms that can be caused by other serious conditions (‘red flags’) should not be attributed to CFS/ME without consideration of alternative diagnoses or comorbidities. In particular, the following features should be investigated: . . . localising/focal neurological signs . . . signs and symptoms of cardiorespiratory disease. . . .” 

And a response from Dr Miller in the Adult Medical section of the clinic forum was also rather topical: “the important thing is to have any new symptom assessed on its own merits and not just attributed to – ‘of, of course. it’s due to the ME’”

Myth #1: GET increases activity levels

Jessica Bavinton: “GET is exactly designed to support people becoming more active over time. We know that becoming gently and sustainably more active seems to be an important component in any therapy that has shown effectiveness in CFS/ME.”

No studies support this claim.  PACE and most other trials involving GET or CBT-including-GET do not use actometers or other objective measures to determine if activity levels increase.  A notable exception to this is a series of three Dutch studies where many ME/CFS patients were declared to be improved based on questionnaire responses after CBT-including-GET. 

Little mention was made of actometers in these studies, until a fourth paper was released, showing that the “recovery” on questionnaires was not matched by any improvement in activity levels as measured by actometer in any of the three trials.

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38 comments

{ 38 comments… read them below or add one }

Firestormm September 6, 2013 at 6:09 pm

Nice going 'partner'. Methinks a certain physio could be 'running for them ther' hills' :) :)

Legendrew September 6, 2013 at 6:29 pm

Great article – it's unreal what some of these ''experts'' come up with…
I think credit has to go to Dr. Charles Shepherd for his extensive and sheer number of answers in this clinic.
Hopefully the sheer volume of questions here will be taken note of with regards to the way ME seems to get shunned.

Valentijn September 6, 2013 at 7:04 pm


Legendrew

Great article – it's unreal what some of these ''experts'' come up with…
I think credit has to go to Dr. Charles Shepherd for his extensive and sheer number of answers in this clinic.

Thanks :)

I was also very impressed with Dr Shepherd and most of the other experts. They put in an amazing amount of time and effort, and really helped a lot of people.

alex3619 September 6, 2013 at 11:23 pm

Thank you for this article Valentijn . :)

meandthecat September 7, 2013 at 12:23 am

Nicely done

Thanks for highlighting the motely collection of predjudice, half-truths and down-right lies peddled by this crew of 'experts' (Dr S a notable exception).

Management/denial/deprivation seem to define our teatment as PWME and the locking down of toublesome comment on the site is perhaps the most telling event exposing the sham nature of the exercise.

I feel like a canary in the medical mine flagging up grave deficiencies in the medical model. Miners didn't try to persuade the little birds they were depressed( though who would blame them) they saw what was happening and ran.
Not that it helped them in the long run, because the people with the power are not those at the coal face.

ukxmrv September 7, 2013 at 1:45 am

Re: TYMES and NICE

Several Charities (including TYMES and the ME Association) came out against the NICE guideline. There was a large groundswell against NICE by patients and a challenge in court.

<snip from submission to NICE from TYMES>

OVERALL VIEW OF THE NICE GUIDELINE

The Trust believes that the present draft of the NICE guideline on CFS/ME is unacceptable, and not fit for purpose for patients suffering from ME.

<end>

From memory the ME Association also condemned the NICE guideline as "not fit for purpose".

Sasha September 7, 2013 at 2:09 am

Thanks, Valentijn – and for your efforts during the clinic to get some straight answers to questions about some of the 'experts' blithely recommending GET. It's very important to challenge these claims with the existing research findings to the contrary when they arise.

Steve Boyle September 7, 2013 at 2:22 am

A superb article. Dr Charles Shepherd has a card in his hand [I won't refer to it as an 'advantage'] that very few of the propounders of a psychosomatic cause for ME/CFS have; he has had to cope with this debilitating ilness himself for decades. A few short days of experiencing the symptoms themselves and the psychobabblers would rapidly change their opinions.

maryb September 7, 2013 at 4:35 am

Valentijn – you are a star – thanks so much for your efforts – super article.

Shell September 7, 2013 at 6:25 am

Good article Valentijn.
Thank goodness Dr Shepherd was there!

My observation of too many "experts" is that they don't know how to think or reason things through. They seem to have been told what to think and that's that. And like people who are told what to think they can't face being contradicted. It must be true because they have been told it's true so it must be true — even when the evidence screams a complete contradiction at them.

Firestormm September 7, 2013 at 6:40 am

Valentijn I popped your article link onto ME Association Facebook. Dr Shepherd replied:

This is a well written account of what happened over a very hectic 7 days at the NHS online clinic last month. Despite taking up an enormous amount of my time I hope we can do this again next year.

Valentijn September 7, 2013 at 8:23 am


Shell

My observation of too many "experts" is that they don't know how to think or reason things through. They seem to have been told what to think and that's that. And like people who are told what to think they can't face being contradicted. It must be true because they have been told it's true so it must be true — even when the evidence screams a complete contradiction at them.

Yes, some of the experts seemed to understand that ME is very much a physiological disease, and that symptoms most certainly should be treated – but would then also show complete and unquestioning deference to NICE and other sources of authority.

Because they seem to be very intelligent people, my impression is that some of the experts are more or less incapable of (or unwilling to be) disagreeing with authority, even when the reasoning used by that authority to create their recommendations is clearly contradictory to their own observations.

Thus we get health care professionals who acknowledge that we have a physiological disease with serious and disabling symptoms which should be treated, and cannot be cured by changing our beliefs and behaviors. Yet at the same time they also advocate treatments based on a purely psychosomatic hypothesis which emphasizes minimizing investigations and physiological treatments.

jimells September 7, 2013 at 2:01 pm

When I saw the name of the author I knew I was in for a good read :thumbsup:

roxie60 September 7, 2013 at 3:31 pm

nice job Val!!

Sparrowhawk September 7, 2013 at 4:03 pm

Well done and thanks.

Nielk September 7, 2013 at 8:13 pm

Thank you Valentijn. I did not follow the clinic while it was up but you gave an excellent overview. I really liked your style of 10 myths. It was very clear and informative.

Sean September 7, 2013 at 9:23 pm


"Thus we get health care professionals who acknowledge that we have a physiological disease with serious and disabling symptoms which should be treated, and cannot be cured by changing our beliefs and behaviors. Yet at the same time they also advocate treatments based on a purely psychosomatic hypothesis which emphasizes minimizing investigations and physiological treatments."

Bizarre and very troubling stuff, isn't it.

Shell September 8, 2013 at 2:36 am


Valentijn
Shell

My observation of too many "experts" is that they don't know how to think or reason things through. They seem to have been told what to think and that's that. And like people who are told what to think they can't face being contradicted. It must be true because they have been told it's true so it must be true — even when the evidence screams a complete contradiction at them.

Yes, some of the experts seemed to understand that ME is very much a physiological disease, and that symptoms most certainly should be treated – but would then also show complete and unquestioning deference to NICE and other sources of authority.

Because they seem to be very intelligent people, my impression is that some of the experts are more or less incapable of (or unwilling to be) disagreeing with authority, even when the reasoning used by that authority to create their recommendations is clearly contradictory to their own observations.

Thus we get health care professionals who acknowledge that we have a physiological disease with serious and disabling symptoms which should be treated, and cannot be cured by changing our beliefs and behaviors. Yet at the same time they also advocate treatments based on a purely psychosomatic hypothesis which emphasizes minimizing investigations and physiological treatments.

Ah yes, the question of authority.
It seems that in not being taught how to think, the "intelligent ones" have lost sight of what the true meaning of authority is. To be in a position of authority is to be in position of service. They are supposed to serve others, not force power over them.
Of course the problem with thinking what you've been told to think, even in the face of all the evidence against it, requires an armour of arrogance. And then we are the ones of the receiving end.
When it comes to psychological problems (although maybe this is deeper even than that) THEY are the ones that need some serious CBT.

currer September 8, 2013 at 5:01 am

Hi everybody, I've just checked out the NHS site – what a piece of blatant propagandising.

Did anyone ask if it was possible to sue a doctor for medical damages following a relapse provoked by exercise programmes such as those promoted by this site?

I'd love to see the "expert's" reaction online.

~ Ariel September 8, 2013 at 1:19 pm

Hi

Thank you for this ~ Shrude ! ~
Did you write On the nHS forum:
" My sleep has been quite good, since I found a supplement to help with my brain being over-stimulated, and some other things to reduce pain…."

If so, what please is the supplement which helped with brain firing? Mine is all all over the shop at the mo…

~ Ariel September 8, 2013 at 1:20 pm


~ Ariel

Hi

Thank you for this ~ Shrude ! ~
Did you write On the nHS forum:
" My sleep has been quite good, since I found a supplement to help with my brain being over-stimulated, and some other things to reduce pain…."

If so, what please is the supplement which helped with brain firing? Mine is all all over the shop at the mo…

PS – Oops …trigger-happy: post went before I could insert your name, Valentijn ~

user9876 September 8, 2013 at 1:41 pm


currer

Hi everybody, I've just checked out the NHS site – what a piece of blatant propagandising.

Did anyone ask if it was possible to sue a doctor for medical damages following a relapse provoked by exercise programmes such as those promoted by this site?

I'd love to see the "expert's" reaction online.

I think a doctor would say they were just following the evidence. I'm not sure that your average doctor would have the time, or intelligence, to read something like the PACE trial papers and despin them. So maybe the question is should Queen Mary's and the Lancet be held liable. I notice that journals have a clause where they try to deny liability but in the UK courts have been known to throw out such clauses normally in consumer cases but there are a few commercial cases as well.

Valentijn September 8, 2013 at 1:54 pm


~ Ariel

Hi

Thank you for this ~ Shrude ! ~
Did you write On the nHS forum:
" My sleep has been quite good, since I found a supplement to help with my brain being over-stimulated, and some other things to reduce pain…."

If so, what please is the supplement which helped with brain firing? Mine is all all over the shop at the mo…

For me it's N-acetylcysteine (NAC) which helps. It can combine with glutamate (excitatory neurotransmitter) and glycine to form glutathione, which could help in reducing glutamate levels. Some people need glycine instead of, or in addition to, the NAC. I take 600mg of Jarrows extended release three times per day – for sleeping, the one right before bed time seems most important.

Joanne60 September 8, 2013 at 2:19 pm

Excellent post. Thank you.
On the subject of an infectious cause of ME/CFS I asked further about ME/CFS and Lyme Disease. There are a growing number of cases of ME/CFS that turn out to be suffering from Chronic Lyme Disease and progress has been made by many on long term antibiotics.
Even if this is only a small percentage of the total cases of mE/CFS it needs to be properly investigated which is something that doesn't currently happen.
I e mailed Dr Kenneth Friedman of SFSAC some time ago and this was his reply 'In the United States, two studies indicate that approximately 30 percent of CFS/ME patients actually have Lyme Disease. Getting physicians to re-check their patients is not easy. '
This is a presentation by Dr Samuel Shor a CFS doctor in which he discusses his study CFS/Lyme Disease http://lookingatlyme.blogspot.co.uk/2012/05/samuel-shor-presentation-on-lyme.html

This was my post on the Talk Health forum – while predictably Dr Shepherd repeats the same outdated stance Dr Miller's comments are interesting in that he accepts that the JLA found many uncertainties. For more information about the JLA research visit http://www.lymediseaseaction.org.uk/
http://www.talkhealthpartnership.com/forum/viewtopic.php?f=493&t=4822

Dolphin September 8, 2013 at 2:45 pm


user9876

I think a doctor would say they were just following the evidence. I'm not sure that your average doctor would have the time, or intelligence, to read something like the PACE trial papers and despin them. So maybe the question is should Queen Mary's and the Lancet be held liable. I notice that journals have a clause where they try to deny liability but in the UK courts have been known to throw out such clauses normally in consumer cases but there are a few commercial cases as well.

I know a friend told me in the medical school he went to (Trinity College Dublin) in the 1990s, trainee doctors did a statistics course but they didn't have to pass it. Don't know the situation in other medical colleges – I imagine they don't spend that much time on such stuff. At that stage, the medical course was six years long (most medical courses in UK at the time were five years) while the Trinity College Dublin course been shortened now and postgraduate medical courses tend to be only four years.

Mya Symons September 8, 2013 at 10:08 pm

Hmmm. I have had a high C-Reactive Protein and a higher than normal sedimentation rate since I was first diagnosed with Fibromyalgia (I was diagnosed with CFS a few years earlier). Does this mean I do not have Fibromyalgia and Chronic Fatigue Syndrome?

I think I will avoid this online site because the misinformation will be too much for me. I don't think anyone, even medical experts, can give definite answers on the causes and treatments for either CFS or FMS because no one is 100% sure on what causes either yet. I still don't understand how a doctor or so called expert can give out advice on FMS/CFS and be so sure of themselves.

~ Ariel September 9, 2013 at 12:54 am


Valentijn
~ Ariel

Hi

Thank you for this ~ Shrude ! ~
Did you write On the nHS forum:
" My sleep has been quite good, since I found a supplement to help with my brain being over-stimulated, and some other things to reduce pain…."

If so, what please is the supplement which helped with brain firing? Mine is all all over the shop at the mo…

For me it's N-acetylcysteine (NAC) which helps. It can combine with glutamate (excitatory neurotransmitter) and glycine to form glutathione, which could help in reducing glutamate levels. Some people need glycine instead of, or in addition to, the NAC. I take 600mg of Jarrows extended release three times per day – for sleeping, the one right before bed time seems most important.

Hi, Valentijn,

Many thanks! I am looking into it.
Mind answering a few questions ( aware this is totally "off-topic"!)
Which brand do you take? – are the caps/gels relatively small ( can't swallow large caps, because of vey swollen lymphs)~ also, I am extremely sensitive to smells; some reviews report capsules/ gelules smell awful ( sulphur). Is it so, in your opinion? – Others report feeling worse initially for a while, because of detox effect. Was that your experience? -

Coming back to your report, I found it truly enlightening, many thanks again for this amazing service to the community ;-) ~ I also learned much from the NHS forum – This thread in particular was of great interest to me (shock, horror, probe!) : http://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4582&sid=f459f819b8488bf766d577ac89f75dd2
Reading the intro of " Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial" was an eye-opener!
Being quite liminal in respect of the NHS, I wasn't aware that there existed in the UK such drastcially opposed schools of thoughts re CFS , (defined in the randomised trial as: SMC, APT , versus the CBT/GET approach)- leading ,as I see it, to a random " lottery" situation for sufferers – "pot luck", as to which view is promoted and consequently which treatment is offered by individual practitioners – what about personnal choice?!
While appreciating other folks may think diferently, I feel SO lucky that my doctor adheres to the "SMC/ APT "school : 15 years down he line, these approch feel so congruent with my intimate experience !
Reading some of the postulations behind the CBT/GET treatments, notably:
" altered perception of effort consequent upon reduced physical acticity ", "reversing conditioning", " a change in the perception of effort is involved"(!!!) and " "participants are encouraged to see symptoms as temporary and reversible"( I wish!!!!) – I was horrrified, and share the witty view expressed there by ChrisofCabra: "If I wasn't being economical with emotions to save energy I'd be horrified…a therapist would have to make a very good case for why I should consider it anything but insulting…For my "altered perception of effort" to be that marked as to account for my level of pain, weakness and lack of stamina and me not to realise it, I suggest I'd have to have a brain as internally divided as Syria. "

Over out, have a good day !

MeSci September 9, 2013 at 2:01 am


Dolphin

I know a friend told me in the medical school he went to (Trinity College Dublin) in the 1990s, trainee doctors did a statistics course but they didn't have to pass it. Don't know the situation in other medical colleges – I imagine they don't spend that much time on such stuff. At that stage, the medical course was six years long (most medical courses in UK at the time were five years) while the Trinity College Dublin course been shortened now and postgraduate medical courses tend to be only four years.

Whilst I would like doctors to have a decent understanding of, and interest in, medical science, from my own experience I don't think I would want to insist on them passing a course on statistics. I managed to get a top-grade Masters degree in medical science with only a cursory ability to do stats – complex, highly-abstract maths makes my head spin!

Valentijn September 9, 2013 at 8:48 am


~ Ariel

Which brand do you take?

I've answered that now at http://forums.phoenixrising.me/index.php?threads/n-acetylcysteine-nac.25176/ so we can chat about it there instead of here. :D

Coming back to your report, I found it truly enlightening, many thanks again for this amazing service to the community ;-) ~ I also learned much from the NHS forum – This thread in particular was of great interest to me (shock, horror, probe!) : http://www.talkhealthpartnership.co…0&t=4582&sid=f459f819b8488bf766d577ac89f75dd2

That certainly could have been Myth #11: If CBT/GET fails, it must be because either the patient is doing it wrong or the practitioner is doing it wrong. Odd how they never explore whether CBT/GET actually works, in a sustainable and objective manner!

It also has the effect of blaming the victim: either the patient or the doctor (often with good intentions) who has been sucked in by the psychosomatic propaganda must be not trying hard enough or is messing up due to incompetence or a lack of proper training. Regardless, CBT/GET is always held to be faultless by its proponents, and the conclusion is that non-responders must need more CBT/GET and/or a slightly different form of CBT/GET.

Being quite liminal in respect of the NHS, I wasn't aware that there existed in the UK such drastcially opposed schools of thoughts re CFS , (defined in the randomised trial as: SMC, APT , versus the CBT/GET approach)- leading ,as I see it, to a random " lottery" situation for sufferers – "pot luck", as to which view is promoted and consequently which treatment is offered by individual practitioners – what about personnal choice?!

It can also get more complicated, in the context of PACE especially, because GET (and CBT aimed at GET) now incorporates traditional pacing is a first step to get to a stable baseline prior to starting the graded aspect. And the pacing used in the trial was not traditional pacing, but with a rather low ceiling imposed (70% of limitations). Hence I have to wonder how much of the "improvement" in the GET group was attributable to the graded aspect, and how much was the result of the pacing aspect – and how many of the patients made it past the pacing stage and into the graded stage. It also would have been nice to have a real pacing group for comparison, especially if something objective (like heart rate via pulse oximeter) was used to determine limitations.

Reading some of the postulations behind the CBT/GET treatments, notably:
" altered perception of effort consequent upon reduced physical acticity ", "reversing conditioning", " a change in the perception of effort is involved"(!!!) and " "participants are encouraged to see symptoms as temporary and reversible"( I wish!!!!)

Agreed – it suggests that those therapists have a complete disconnect with reality and their patients. It seems to be the result of a very dogmatic approach to ME/CFS: they have pre-determined that CBT is the cure (with GET being used for purely psychological reasons), and have warped their view of all symptoms and responses to comply with that dogma. Any contradictory evidence is either ignored or contorted until they can explain it away.

Valentijn September 9, 2013 at 9:05 am


MeSci

Whilst I would like doctors to have a decent understanding of, and interest in, medical science, from my own experience I don't think I would want to insist on them passing a course on statistics. I managed to get a top-grade Masters degree in medical science with only a cursory ability to do stats – complex, highly-abstract maths makes my head spin!

I had to take a statistics class for my undergrad degree, and it was rather hellish – I think they dropped it the next year. But for certain professionals, I think there can be a compromise. Instead of having to learn how to actually do everything and produce the statistics, they could be trained in just learning how to understand statistics, and the basics of how they are produced, without getting into the more complicated aspects of the mathematics involved. And they should certainly be learning how to thoroughly and skeptically read research relevant to their profession :p

MeSci September 9, 2013 at 10:28 am


Valentijn

I had to take a statistics class for my undergrad degree, and it was rather hellish – I think they dropped it the next year. But for certain professionals, I think there can be a compromise. Instead of having to learn how to actually do everything and produce the statistics, they could be trained in just learning how to understand statistics, and the basics of how they are produced, without getting into the more complicated aspects of the mathematics involved. And they should certainly be learning how to thoroughly and skeptically read research relevant to their profession :p

Definitely, and especially what equates to statistical significance in most situations in medical science papers, viz. p < 0.05. And the meanings of specificity and sensitivity, false-positive, false-negative, etc. I don't know if they are taught these things, but I have been shocked at doctors' ignorance of basic human biology sometimes. (I will freely admit that my knowledge of anatomy is patchy, but at least I know my anus from the synovial hinge joint between my humerus, radius and ulna.)

Roy S September 9, 2013 at 5:50 pm

Well sure, it may be hyperbola that is promoting CBT/GET, but it's new and improved hyperbola!

That makes it different. ;-)

There is a previous thread here about a meta-analysis of CBT for depression. Apparently they don't speak hyperbola.

http://forums.phoenixrising.me/inde…ons-value-over-other-talking-therapies.21541/
 
Thanks for writing this article, Valentijn. Do you have more than 11? :)

Valentijn September 9, 2013 at 8:31 pm


Roy S

Thanks for writing this article, Valentijn. Do you have more than 11? :)

I think I had a couple backups, in case one of the top 10 didn't work out :p

Firestormm September 9, 2013 at 9:27 pm


Valentijn

I think I had a couple backups, in case one of the top 10 didn't work out :p

More than a couple methinks :snigger:

justinreilly September 11, 2013 at 4:30 pm

Excellent job, V!!

Purple September 11, 2013 at 7:06 pm


~ Ariel

Reading the intro of " Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial" was an eye-opener!

Hi Ariel,
You may be interested in watching the following videos which summarize some of the results of the PACE trial in an accessible manner (if you are able to watch videos): http://www.youtube.com/user/MEAnalysis/videos?flow=grid&sort=da&view=0
The videos are between about 2.5 and 6 minutes long.

~ Ariel September 23, 2013 at 10:46 am

Hi Purple ~ Thanks!
I am sometimes able to watch videos.

WillowJ December 12, 2013 at 5:12 pm


Dolphin

I know a friend told me in the medical school he went to (Trinity College Dublin) in the 1990s, trainee doctors did a statistics course but they didn't have to pass it. Don't know the situation in other medical colleges – I imagine they don't spend that much time on such stuff. At that stage, the medical course was six years long (most medical courses in UK at the time were five years) while the Trinity College Dublin course been shortened now and postgraduate medical courses tend to be only four years.

I believe a beginning course in statistics is required in the US for pre-med, pre-dental, and life sciences and as a prerequisite for medical school.

At my school, I am unsure whether that one had to be passed like a course in one's major/minor with a B (or c+? if one had only one those or something like that) or better, or like a general studies course with, not sure the lowest acceptable grade, a C or C- or D or something.

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