The ME community can harm patients

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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.
Sorry to say, but this "lady" has no plans to stop. She has been terrorizing us in Norway with articles like this for more than six years (that is when I got ME and was made aware of her). Seems like there is no way to stop her. I wish she would, because every time she posts a new article I get so upset and get stronger symptoms. If anybody has an idea how to stop this reporter I would be grateful for tips.
 

alex3619

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I used to be that ill. The possibility that you were exerting mind control over me cannot be excluded. After all, the ME community can harm patients.
To use the psychogenic proponents "logic" -

There is no other known cause of such ME severity, so magical vibes from harmful forums must be the cause.

With "logic" like that, who needs evidence?
 
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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.
This is excactly what they do, if patients fail to recover it is because they haven't done the process good enough, the same if they get worse then they were. But, if you are lucky you kan get a second course for free. #puke
 
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Sorry to say, but this "lady" has no plans to stop. She has been terrorizing us in Norway with articles like this for more than six years (that is when I got ME and was made aware of her). Seems like there is no way to stop her. I wish she would, because every time she posts a new article I get so upset and get stronger symptoms. If anybody has an idea how to stop this reporter I would be grateful for tips.
I think this sort of drivel can be stopped if forums like this make it clear that patients are interested in good science. Norway is strangely divided between good scientists and babblers on this but at least there is a clear distinction. In the UK the scientists and babblers have been too happy to cosy up to each other. I think that may change soon. The new EMERG collaborative should make a difference for Europe as a whole. Babblers are now getting marginalised. Tails are going between legs.
 

Strawberry

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It's not just a placebo effect that will skew the apparent effects of the lightning process; but reporting bias is built into into the therapy. If children are instructed to believe and say that they are well, and if they then get a negative response from adults (in a position of responsibility - their care givers) when the children report that they are no better, then the children are most likely to report improvement even if there is no change. It has the potential to be an abusive misuse of authority. And goodness knows what detrimental developmental effects might be involved in training children to ignore symptoms of pain and fatigue, and to believe they are well when they are in fact unwell. Teaching a child to ignore and distrust their reality doesn't seem like a good idea to me. Telling a child that they are wrong when they say they are unwell goes against all the fundamental basics of care giving. It's seems more like child abuse. And that's not to mention that the lightning process is akin to faith healing, and why it's seen as acceptable to use faith healing for children (or anyone) with ME/CFS when it would be considered abhorrent to promote faith healing as a medical treatment in e.g. adult cancer patients.
I just grabbed one quote, but there were many posts mentioning they were using it on children, and screening for adults that want it to work.

This sounds a lot like selecting for hypnotism. You know, like the traveling groups that hypnotize groups of people on tv or at county fairs. Probably the same selection process.

:whistle:

So maybe this is just a cheap carnival trick afterall...
 
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Snowdrop

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mango

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A reply from me on behalf of Norges ME-forening (the Norwegian ME Association) was published in the same paper - VG - today. I was also published in the printed paper.
http://pluss.vg.no/2015/08/06/2109/2109_23501084
excellent! really well written! thank you so much for doing this! :thumbsup:

re: landmark... i couldn't help thinking of her when i read this norwegian comic strip earlier today... ;)

 
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As a response to this, our newly started blog The ME Parents wrote the following (originally ment to be published in they paper, but they wanted to end the debate for now):

In leading Norwegian newspaper VG (3.8.15) Lightening Process-instructor Live Landmark admits that she for several years refused to seek necessary medical assistance from doctors for her ME, based on advice and media initiatives from the «ME-society» and their advocates. From the patient organizations she claims to have received the «overwhelming” information that pacing is a good treatment for most patients with ME. Landmark expresses deep concern that patients in response to neglect and maltreatment seek together to make a difference. She points out the danger of polarization, where those who tries to voice other opinions are seen as opponents.

Seeking Medical Assistance
But the many ME-patients we have met in online fora sincerely wishes to be helped by a good public doctor. The hunt for a good doctor actually is a recurring theme online. Pacing , as a patient organization should have recommended Landmark , is in line with public health advice and international research. Pacing can also be used in combination with cognitive therapy. Research shows that, unfortunately, cognitive therapy have little effect on the majority of patients with ME, but the patient organizations still recommend this approach for the patients who may benefit from it.

It is true that most ME patients regard their illness as a «physical illness», and there are indications that they are right – at least for a large percentage of the patients with a ME diagnosis.

The need of Humbleness and Professional Substance
The debate will grow larger in the near future – as more precise and new knowledge is being produced by the expertise regarding the disease and the methods of treatment. It is important that such information is conveyed accurately and correctly. It is also important to discuss ME from many different angles, including the side Landmark wishes to voice. However, a debate requires humility and professional substance. We need voices that see both the large picture and the diversity, not wanting to impose treatment on patients that make them worse.

"Unfortunate Polarization", Landmark writes
Yes, unfortunately! And landmark is among the leading contributors in this respect: In the way she uses the word «ME-community», it seems that she intends to stigmatize ME-patients so that they are perceived as some sort of a “religious sect” desperately clinging to the misconception of ME as a physical disease. Why establish this image? And who is in the group Landmark wants to mark as part of the “ME-community”? Patients, next of kin, health workers, politicians and researchers and others who express their opinions on ME in a way that she resents? Is the Norwegian Prime Minister a part of this sect? PM Erna Solberg recently claimed that the mistreatment ME-patients have experienced is a scandal and a dark chapter in the history of Norwegian public health care system.

Help
“At the same time desperate patients seek together collectively in potentially harmful internet forums. They need help now.” [our translation], Landmark continues. This way she puts herself above the tens of thousands of people, many of whom with far more insight and professional understanding of ME than herself. Such a form of debate is not necessary, and we think this way of communication will backfire.

On our part we gladly accept debates about ME from different points of view. We welcome articles and debates with academic substance and at the same time humility and respect towards patients, their families and the professionals who work with the challenges of ME. Those who still live their daily lives inside the dark chapter of Norwegian health care deserve our respect.

Text by The ME Parents (former ME mum's confessions)
 

anciendaze

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Let's start with a definite symptom I have, which many of you should be able to relate to, which also produces objective clinical evidence. My pulse pressure (systolic-diastolic) looks OK when I first stand up, but drops while I remain standing. After 10 minutes it reaches about 25 mm hg. If forced to stand for 20 or 30 minutes, without walking, I will pass out. I demonstrated this repeatedly during my involuntary Army career. (Had anyone paid attention I would have received a medical discharge.)

If this were a consistent reading, I would be considered to be in heart failure. I do not have heart failure; I have neurally-mediated hypotension (NMH). This is a recognized condition published in reputable journals by highly-competent doctors. (Not every doctor can put the initials FRCP behind his name.) What is more this is a treatable condition. (Note the journal in which this was published. Naturally, there are disagreements about how best to treat it, but what else is new?)

The simple way to test this is to let me lie down until my heart rate and blood pressure are at basal levels, then measure again after I stand up, and again at intervals of several minutes. When the pulse pressure reading becomes too low to measure you stop the test to avoid syncope. A more sophisticated test involves measuring total erythrocyte volume. There is no question these are objective measurements.

Now consider what happens when you take this problem to a typical doctor. I've repeatedly been told my blood pressure was great. I've been told "that's not the way you take b.p." When I say that the drop takes place over 20 or 30 minutes, I've heard "that doesn't happen!". In people with correct autonomic function it does not; the system stabilizes in a minute or less. I have definite abnormalities in autonomic function. I've been accused of faking symptoms, for reasons which don't make much sense.

This isn't everyone's problem. Many people with orthostatic intolerance have unusually high heart rates when they stand up. If this crosses some threshold it is called Postural Orthostatic Tachycardia Syndrome (POTS). Doctors concentrating on heart rate may give beta blockers to lower heart rate. In some cases this helps, but there are also cases where lower heart rate causes such low pulse pressure while standing that the patient becomes confined to bed.

Generally, doctors are not worried about this. They are worried that untreated tachycardia might become fatal. Even many who think they understand POTS typically neglect the drop in pulse pressure which happens over 20 or 30 minutes while upright. This can result in falls, syncope or such extreme bad judgment that the patient makes a fatal mistake. If the patient makes errors in judgment the prescribing doctor is off the hook. I've commented on a local suicide that made the news. Various doctors involved still don't see that they made any mistakes.

You may not have either of the problems I've named, but if you do, you are very likely to end up in the "CFS" diagnostic bin. Once you are referred to a mental health professional you should expect other doctors to ignore the vast majority of statements you make.

The frightening thing here is that those mental health professionals have no way within their area of expertise to falsify the hypothesis of mental illness. They are not even interested in simple things like measuring blood pressure, and they will let patients bounce back and forth indefinitely between other medical professionals who have their own diagnostic blindspots.

There are definitely people who could benefit from counseling, but the ones least likely to benefit are those with untreated physiological problems. Unless the profession does a better job of catching physiological problems which do not belong in their offices there will come a day of reckoning when the whole profession will be discredited.
 

deleder2k

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Here is the response by @Trude Schei, acting secretary general for the Norwegian ME association


Translation done by Trude Schei and a member of the ME association.
Why complain if it works?



ME patients from a variety of countries report that cognitive therapy and graded exercise make them more ill – why would they lie about it?




By TRUDE SCHEI,


Trude Schei



Has anyone ever heard about patients complaining about treatment that works? Patient surveys from the UK, Norway and Ireland, among others, show the same results – more patients experience a worsening of symptoms as a result of these therapies than those who benefit from them.



Live Landmark (the most highly profiled advocate for Lightning Process in Norway) insists there in a conspiracy in an online «ME community» that opposes serious scientists, only spreads information if it agrees with its own views, and even gives harmful advice to patients. According to Landmark, the patient organisations are part of this conspiracy.



Logical explanations

A simple explanation is often the best explanation. Instead of searching for conspiracies, perhaps Landmark should have a look at the obvious, logical explanations for the phenomena she describes.

ME patients spend a great deal of time online simply because they are ill to the point where many are confined to their homes or even their beds. Online social contact is often the only social contact they have. There are numerous ME related groups, many of which has nothing to do with ME (e g photography or interior design), and only a handful are administrated by the patient organisations.



In addition, there are a plethora of blogs where discussions run high. These Facebook groups and blogs have their own identities, often divergent views on research and treatments. As far as I know, there is no homogenous “ME community”.



I am myself the admin of a Facebook ME patient group of about 3 000 members. In Norway as a whole, there is probably somewhere in between 10 000 and 20 000 ME patients. No matter which group one examines, there will be individuals purporting stronger and less nuanced opinions than others. If you look at, say, cooperatives and co-ownerships, you will find a similar occurrence of disputes. ME patients are just like other people.



Using the statements of a few to judge the entire group of patients is thus unreasonable.

Listening to the patients

A varied and nuanced debate on ME is essential. Polarising fractions is not helping anyone. But a fruitful debate does not simply mean that patients listen do the doctors; it means doctors and scientists need to regard the patients’ experiences with respect and actually listen to what they say. And it means these professionals have to take into consideration the question I initially posed: Why would patients complain about treatments that work?

The Norwegian ME Association believes that cognitive therapy, used correctly, can be a valuable tool in mastering serious disease. However, when cognitive therapy is utilised to “cure” ME, user surveys from several countries unequivocally show that the majority of patients get worse rather than better. Looking at graded exercise, the numbers speak even more clearly. Now, why would patients complain about these treatments if they really did work?

And why do some patients still benefit from them?

Insufficent research

As with all other areas concerning ME, there is a monumental lack of research on diagnostic criteria and prevalence. The Institute of Medicine (IOM) in America recently presented a report proposing a new set of diagnostic criteria to be validated and re-evaluated within five years.

Two British studies illustrate the importance of clear and unambigous criteria.

These studies showed that almost half of the patients who were diagnosed with ME in fact had been misdiagnosed. A range of diseases have similar symptoms, and the patients suffered from conditions such as sleep apnea, other sleep disturbances, coronary disease, multiple sclerosis or depression.



The enormous degree of misdiagnosis is tragic, mainly for those who suffer from illnesses that are treatable and who instead end up with an ME diagnosis. Also, diagnostic criteria that may include persons who do not suffer from ME

makes it difficult to conduct good research. Studying patients with similar symptoms but different diseases tells us nothing about ME. The many cases of misdiagnosis also means that one should be very cautious in seeing one patient’s experience as representative for the whole group. As long as there is no biomarker for ME, no one can know with 100% certainty that any given patient actually suffers from ME.

Well documented

At the moment, the closest thing to a diagnostic test for ME is a two-day cardiopulmonary test. This is a failsafe test to measure one’s ability to exert oneself. I have myself completed the test, and on day 1 I managed to perform as well as a sedentary adult of similar age. On day 2, however, my physical function was dramatically diminished. This phenomena is characteristic and practically unique for ME patients, and has been well documented in a series of peer reviewed articles. All other patients perform as well or as poorly on day 2 as they did on day 1. Part of the explanation for this may be found in a recent study that documented how the muscle cells from ME patients show abnormal behaviour in vitro. Clearly, this has nothing to do with the patient’s psyche.



I am not alone. Experiencing a prolonged symptoms increase when exerting oneself is characteristic for ME to the point where IOM signifies this as the most important symptom along with the actual fatigue.



IOM also suggests a fresh name for the illness: Systemic Exertion Intolerance Disease. “Systemic” because every single system in the body is involved. In medical terms, “exertion” means that the muscles are working. “Intolerance” is self-explanatory. “Disease” underlines that this is an illness, not just a condition. Before presenting their report, IOM examined more than 9 000 articles. In all likelihood, they also had a peek at the articles to which Live Landmark is refering.

The PACE study would certainly also have been included. Had Landmark made herself familiar with it, she would have known that no objectively measured improvement was found for neither cognitive therapy nor graded exercise. A flaw in the design of the study meant that patients could deteriorate during the study and still be considered “recovered”. The authors of the IOM report found no evidence of any effect of cognitive therapy on ME.

Not representative

The Norwegian ME association is thrilled for any recovering patient with an ME diagnosis, regardless of which road they travelled to achieve this goal. Undoubtedly, some have experienced an improved condition through varied types of mental training. According to magazines, some have regained their health through diets, and others have reaped the benefits of physical exercise. However, these patients are not representative for ME patients.

Most people suffering from ME have tried the proverbial «everything» throughout many years of illness. The Norwegian ME association recommends pacing and finding a balance between rest and activity. This advice is based on clinical experience from renowned ME experts, and on research and patient experience. Very few have made complaints about this advice, but many patients say they have become more ill as a result of graded exercise.

Again – why would patients complain about a treatment that actually works?