The ME community can harm patients

[deleder2k]

This was published in the biggest newspaper in Norway today by the therapist and former journalist Live Landmark. She has been "educating" and "curing" patients with Lightning Process for years. She was recovered from ME herself by doing the "process" herself.

Headline: the ME community can harm patients


Published in VG 2015.08.03 (Norway’s largest newspaper)


Original headline: Research Based ME debate

The prevailing view of the ME-society is that ME is primarily a "physical illness".

But cognitive behavioural therapy and customized training still has the best documentation.

Disregarding the consequences of psychological mechanisms may prevent patients from recovering.

Norwegian Broadcasting Corporation reports that 5 times as many patients is diagnosed with ME compared to 2008. At the same time patients are desperately communicating together in public on potentially harmful Internet forums. They need help now.


Little space for counter-voices

According to Norwegian Patient Register 306 persons were diagnosed with ME by a specialist in 2008, while the figure was increased to 1,525 last year. In Sweden and Denmark ME is almost unknown. A Norwegian study published in an international journal showed a virtual community with strong cohesion and sense of belonging. It is an Internet-based ME community with a common understanding of reality about what ME is, what must be done and who is responsible.


Another study shows that ME patients are 10 times more active online than other patient groups. This is explained by persons who have a stigmatized condition use the internet to find explanations or treatment.


When one suspects that one has ME, or when the diagnosis is confirmed by a physician, the patient associations is a natural place to seek information. So did I. The message was overwhelming. I had to "save energy and adapt activities", and rely on me a life as disabled. What I did not know was that they are negative to treatment that does not support their view that ME is a physical illness.


As a patient, I was seeking and ended like many others on the internet. It was discouraging. The norm of the ME community is that they present negative experiences. The researchers, who followed 14 ME forums over three years, found no examples of positive experiences with health services. The strong culture of "what is allowed to say" leave little space for counter-voices.


Unfortunate polarization

ME-society prevailing view is that ME is primarily a "physical illness". Members spreads information that matches their understanding of reality and criticizes research that do not.


One advantage of internet forums is the feeling of being united. The challenge is that it reinforces a group identity, where the consequence can be a devaluation of "the other side". This means that those who participate in the ME community can come to look at those who have a different view as real "opponents". This forms the basis for an unfortunate polarization, affecting researchers, clinicians and patients.


The ME community is also active with the health authorities. They organize petitions and they mobilize politicians. Former health minister Anne-Grethe Strøm-Erichsen chose to override the Norwegian Research Council, and make a direct grant of several million Norwegian kroner to a single study in cancer medicine for ME patients.


Solid research can give hope to desperate patients and discouraged processors, but it is overshadowed by doomsday prophecies on the Internet and in the media. In the ME debate it is repeated constantly that there is neither a cure or treatment. The fear is that the complaints are linked to psychological mechanisms. A pediatrician at Haukeland University Hospital recently said that he wished that the disease "was in the head," but he saw no sign of it. In the ME community and among their supporters, it is common to argue that patients should "save energy". Doctors and scientists who advocate another disease understanding is criticized and accused of not taking patients seriously. I followed this strategy for several years. I rested and tried to limit activities that gave worsening. As a patient I did not know that such advice should have scientific evidence.


Negative effect

Today I know better. Now I know that the PACE trial, the largest study of ME ever, did not find improvement in the patients when they "saved energy". A follow-up study concluded that one can fully recover from ME. Cognitive behavioral therapy and customized training treatment gave the highest probability of rehabilitation.


In retrospect of this study, together with recent studies with positive effect, the authors have been criticized for using too "wide" diagnostic criteria. The allegation is that the trials included people who may have been mentally tired and had not "physically" ME based on the "correct" diagnosis criteria.


Diagnostic criteria is a recurring theme, especially among patients, and it is therefore important to highlight the internationally published study from 2014. 20 different sets of criteria for ME / CFS were reviewed. The conclusion was that there are no scientifically documented evidence that some criteria are better or more accurate than others. The findings are supported by a new study published in the summer of 2015.


ME is a state of physical symptoms and not a classic mental disorder. This is supported by the American report from the Institute of Medicine. It still says nothing about either the cause or treatment. Cognitive behavioral therapy and customized training still has the best documentation.


A key point is that these therapies depends on the patient's motivation and active participation. The consequence of the ME community, and initiatives from their supporters, can be a negative effect in patients who are already in treatment. It may also make patients neglect or awaiting to seek the kind of help, as I did for severel several years. The ME patients do not have the time.

Translation by Google and myself. Please ask if something is unclear. I know the Norwegian ME association is already in the process of writing an answer.

Original article available here: http://www.livelandmark.no/me-samfunnet-kan-skade-pasientene/

Update August 10: A response to the chronicle was made by the Norwegian ME association. It is available here: http://forums.phoenixrising.me/inde...ty-can-harm-patients.39090/page-6#post-627919

 

[A.B.]

It's worth mentioning that these individuals tend to believe that it is ethical to lie to patients in order to provoke a strong placebo response which they believe to be curative. All the LP practitioners claim to have suffered from ME which they cured with the treatment they're offering.

I hope someone points out that the PACE trial, as presented, is essentially a fraud.

 

[user9876]

It should be pointed out that the "". A follow-up study concluded that one can fully recover from ME." was not a follow up study but just another paper where they redefined recovery to below the trial entry criteria.

But this does provide an interesting quote and material to point out to QMUL who refuse to release the recovery data as defined in their protocol that what they are providing is being misinterpreted

 

[worldbackwards]

I'm always touched by people so clearly concerned for our wellbeing. Hell, why don't we just let them run everything and have done with it? Oh, wait a minute...

 

[jimells]

Wow, this is so over-the-top, I have to wonder if the psychobabblers are getting nervous.

It's truly amazing that the author acknowledges we have a physical biochemical illness, but still insists that we should be treated with mental illness treatments, and that biochemical treatments should not be researched.

I actually looked at one of the referenced "research" papers. I love how their "conclusions" are almost all hypotheses, none of which are supported or even addressed by their actual study as outlined in the abstract.

I also find it interesting that all the research references are for psychobabble research, while the barely mentioned Fluge and Mella research does not deserve a link to any of their papers.

Our advocates can certainly have a field day with this ridiculous article. It will be interesting to see if the psychobabblers will be forced to retreat, at least a little, under the hail of criticism.

 

[Wildcat]

Nowegian news report on the 13 year old's attempted suicide after Lightning Process
13-year-old attempted suicide after ME courses
The family hoped the 13-year-old with fatigue syndrome would get well on course "Lightning Process." Instead he got breakdown and tried to take his life.


http://translate.google.no/translate?sl=no&tl=en&js=n&prev=_t&hl=no&ie=UTF-8&layout=2&eotf=1&u=http://www.nrk.no/helse-forbruk-og-livsstil/1.7891470&act=url

 

[Aurator]

"they are negative to treatment that does not support their view that ME is a physical illness."

This whole article misses the point. ME being a physical illness is not a "view"; for many patients, including myself, it's simply a fact.
Certain people who've had a good experience of the Lightning Process (and possibly been fortunate in having a particular type of ME in the first place that others don't have) love to trumpet its success at providing a cure, but I'm pretty sure the much repeated assertion that "these therapies depend on the patient's motivation and active participation" is not just a cynical disclaimer; I suspect there is evidence to suggest it's simply untrue. Does anyone have dependable statistics on the Lightning Process' failure rate for pwME who participated fully in the course? If they continue to argue that people who have lasted the course and yet still fail to get better do so because they're insufficiently motivated, then there's really no way anyone can take the treatment seriously in the first place.

 

[msf]

Haha, if she was English I would say her name had to be a marketing decision.

 

[anciendaze]

In retrospect of this study, together with recent studies with positive effect, the authors have been criticized for using too "wide" diagnostic criteria. The allegation is that the trials included people who may have been mentally tired and had not "physically" ME based on the "correct" diagnosis criteria.

Those authors had their choice of 3185 patients referred by primary care doctors as having "CFS". Their own assessment was that only 60% of 641 chosen patients should be considered "responders". Nobody else is able to check this claim, but even if we accept it, we find they were able to find only a few hundred "responders" out of an intake of thousands. Claims of physical improvement, even in this subgroup, simply failed to be validated.

What this study actually established is that even if those authors are given a free hand in selecting patients, to such an extent that those who are said to benefit represent an insignificant fraction of the total population diagnosed with this illness by referring physicians, their preferred therapies cannot produce any clinically significant improvement in physical condition.

Whatever therapists following this line of argument are doing, it is completely irrelevant to solving the corresponding public health problem, except possibly in the same sense as shooting sick people reduces public health problems.

 

[A.B.]

Does anyone have dependable statistics on the Lightning Process' failure rate for pwME who participated fully in the course? If they continue to argue that people who have lasted the course and yet still fail to get better do so because they're insufficiently motivated, then there's really no way anyone can take the treatment seriously in the first place.

We know that Phil Parker had to make modifications to his website because of claims of treating ME/CFS. I doubt there are any studies. I think there is currently one study underway for LP in children (with the usual methodological problems). No doubt they'll report great success but won't have any objective evidence to support that claim.

 

[Seanko]

Interesting that somebody is complaining about too much biomedical treatment?!?!

 

[Snowdrop]

Sticking people with LP is all fine and well -- so long as those people aren't actually sick. But for those who are I would certainly like to know if there is any long term follow up.

I was able to push through my illness for a number of years-- though not without consequence. One would expect the same for those 'made well' by LP.

The severely ill can't do that of course. These people seem to be invisible to the cognitive practitioner. Where is their compassion for the severely ill. I suppose as long as we have no effective marker to separate the truly ill from the fatigued this nonsense will continue.

We know that Phil Parker had to make modifications to his website because of claims of treating ME/CFS. I doubt there are any studies. I think there is currently one study underway for LP in children (with the usual methodological problems). No doubt they'll report great success but won't have any objective evidence to support that claim.

Yes, no doubt any number of us here could write the 'conclusions' blurb ahead of the completion of the trial and come quite close to what will be the actual document.

To every season spin, spin, spin.
May as well rely on 'mystic crystal revelations' (from one of my favourite songs -- it always makes me smile). Why even bother with science.

 

[Jonathan Edwards]

I hope someone points out that the PACE trial, as presented, is essentially a fraud.

I would be happy to if I knew the address for letters to the Norwegian editor. But actually there is no need. This journalist will no doubt discover that her ridiculous article is being discussed on that naughty internet forum. (Ooh such a naughty forum!) If she spent a little more time browsing said forum she would discover that this is actually the only place where research is subjected to proper scientific critique. At scientific meetings everyone is polite, even when bad research is presented together with peevish complaints about the patients being critical. On PR you are unlikely to get away with dodgy research. And a few researchers have been disappearing with tails between their legs recently. That's it girl - tail between legs and trot off now if you are reading this little diatribe from an eminent professor of medicine.

They all keep an eye or ear on what goes on here one way or another. Not so long ago one of the researchers whose work has stood up pretty unscathed to the dissection on PR was kind enough to say that he appreciated my efforts to try and 'bring things together'. We are usually 'that forum' rather than PR, but why should we complain. After all we even have the opposition writing articles about how naughty we are.

If there was a scrap of scientific integrity to this article one might concede that there can be a bit of inter-patient hype at times (I know because I get stick for pointing it out when it does!) but this is drivel. And a psychotherapist ought to know a bit more about human nature than to write stuff like this anyway.

Tail between legs, there's a good girl.

 

[TiredSam]

http://www.livelandmark.no/

So somebody sets themselves up as a "lightning process practitioner", thinks everybody should be her customer, and writes a tirade of nonsense about those ME patients who chose not to be. And despite no apparent medical qualifications, as an ex-journalist she is given space in a national newspaper to do so. The whole thing is just an advert for what she's selling. She'd never be allowed to make those claims in an actual advert, but because she's an ex-journalist she gets to have her "article" published, without the editor or anyone else at the paper giving a thought about how damaging, insulting and abusive it is to ME patients who have made an informed choice not to avail themselves of her product.

There is a strong ME online community because we get nothing but abuse nearly everywhere else. The fact that many people on ME forums hold views other than hers seems to be enough justification for her to demonize them in a strangely paranoid fashion. I find there's a remarkably wide range of views and civilised exchange on this forum, it bears no resemblance to the authoritarian, ME police-run state she has conjured up in her angry little imagination.

Just when I was starting to think what a wonderful place Norway must be.

 

[deleder2k]

The author Live Landmark refers to the study "United We Stand": Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community when speaking about the "ME community". A few months ago it received harsh critique from from the Norwegian National Research Ethics Committees, mainly because the authors included subjects online without asking for approval (an automated translation of the statement is available here).

Only Norwegian forums that were a part of the study. I am not sure if Live Landmark is following this forum, but I guess she knows about it.


I hope the Norwegian ME association is capable of making a good response. Someone needs to tell the public that most of her statements are not accurate at all.

 

[Nielk]

It seems like this writer would be much more comfortable if ME patients were not so well informed, organized and actually take part in the path to their own health.

Should we apologize for not being naive enough to accept any unproven and possibly dangerous treatments that are shoved down our throats?

I don't think so!

 

[alex3619]

I actually looked at one of the referenced "research" papers. I love how their "conclusions" are almost all hypotheses, none of which are supported or even addressed by their actual study as outlined in the abstract.

Hallmark of pseudoscience.

 

[Sidereal]

"Cancer drug", OMG, will someone think of the children!

 

[Bob]

In the ME community and among their supporters, it is common to argue that patients should "save energy". Doctors and scientists who advocate another disease understanding is criticized and accused of not taking patients seriously. I followed this strategy for several years. I rested and tried to limit activities that gave worsening. As a patient I did not know that such advice should have scientific evidence.

All the author is describing here is an anecdote that she didn't recover after resting. It's ironic that the author uses an anecdote to make her argument considering that in the same breath she demands scientific evidence.

But, in fact, there are research studies that demonstrate objectively-measured deterioration in physical capacity after a period of exertion, and there are research studies that have observed alterations in gene expression after exertion that are specific to ME when compared to healthy people.

Also, all the major definitions of ME include the characteristic of post-exertional exacerbation, whereby exertion has a detrimental effect of the illness.

Today I know better. Now I know that the PACE trial, the largest study of ME ever, did not find improvement in the patients when they "saved energy". A follow-up study concluded that one can fully recover from ME. Cognitive behavioral therapy and customized training treatment gave the highest probability of rehabilitation.

It's ironic that the author calls for scientific evidence and then recommends CBT, for which the "largest study of ME ever" actually demonstrated no objectively measured improvements in patients: In the PACE trial, there were no significant improvements in any of the trial's objective measures after treatment with CBT (i.e. no significant improvements in: physical capacity in a walking test; fitness in a step test; employment data, welfare benefit claims; or private insurance claims.)

The trial was not a gold-standard double-blinded placebo-controlled trial, and the small number of participants who reported feeling better after treatment in subjective self-report assessments, could be explained simply by the weaknesses in the study design.

The trial used a flawed definition of 'recovery' whereby a patient could deteriorate after treatment and have a poor level of physical function and yet could still be classed as 'recovered'.

ME is a state of physical symptoms and not a classic mental disorder. This is supported by the American report from the Institute of Medicine. It still says nothing about either the cause or treatment. Cognitive behavioral therapy and customized training still has the best documentation.

The Institute of Medicine report says of CBT: "analysis of existing studies revealed no evidence of treatments effective at restoring the ability to work".

The IOM report says of post-exertional malaise (PEM): "One common characteristic of PEM is delayed ability to return to prior levels of physical capacity after physical exertion" and "subjective reports of PEM and prolonged recovery are supported by objective evidence, including failure to normally reproduce exercise test results (2-day CPET) and impaired cognitive function".

 

[Gijs]

I think she is forgotten the refrigerator mother theory a widely discarded theory that autism was caused by a lack of maternal warmth. Current research indicates that genetic factors predominate in the cause of autism. Blaming the victim in this case the ME Community says a lot of this pseudoquaker. I hope one day that they (the quakers)acknowledge the mental harm they have done to the ME patiënts. It is criminal and unethical. They should be sued.