LP coach on research, Lightning Process and ME (Norway)

A newly diagnosed girlfriend (of a friend of the family) was excited to go and get treatment (paid for by her parents, who were thrilled at the prospect of getting their daughter better). It sounds like she had LP.

Her rapid decline (and need to now use a wheelchair) has shocked family members and friends - two of them ex nurses who have never seen anybody deteriorate so fast!
 
dangermouse said:
A newly diagnosed girlfriend (of a friend of the family) was excited to go and get treatment (paid for by her parents, who were thrilled at the prospect of getting their daughter better). It sounds like she had LP.

Her rapid decline (and need to now use a wheelchair) has shocked family members and friends - two of them ex nurses who have never seen anybody deteriorate so fast!
Click to expand...
I am so sorry to hear this and I've heard so many similar stories. It is heartbreaking. :cry: I am sure the parents intentions were the very best and I can't imagine how they must be feeling now.

If it was Lightning Process your friend had, she and her family have no rights now neither as customers or patient. It makes me so furious!

It is important to tell these stories because LP is not just something harmless to try with nothing to lose.
 
Kalliope said:
I am so sorry to hear this and I've heard so many similar stories. It is heartbreaking. :cry: I am sure the parents intentions were the very best and I can't imagine how they must be feeling now.

If it was Lightning Process your friend had, she and her family have no rights now neither as customers or patient. It makes me so furious!

It is important to tell these stories because LP is not just something harmless to try with nothing to lose.
Click to expand...
I really do think there should - and maybe is - a legal case to answer here. The poor parents and patient were clearly duped by callous fraudulent selling to very vulnerable people. These b*stards are no better than other con artists who destroy people's lives; in fact they are worse than most. They are disgusting. Surely to god there must be a law - an enforceable law with some teeth - that can bring these people to justice.

Is it worth bringing this to the attention of Carol Monaghan @Eagles? I really want those in power to be made aware that in the future they may be called to account for their INaction and lackadaisical attitude, in the face of examples like this. Maybe Carol Monaghan is the person to help them realise it could be in their own selfish future interests to be a bit less selfish now. Feeling really p*ssed off with the whole useless bunch of them.
 
Kalliope said:
I am sure the parents intentions were the very best and I can't imagine how they must be feeling now.
Click to expand...
With the following I do not say that the parents forced their daughter to do LP - it sounds like she was happy to try it and hopeful about a cure.

I just say something which comes from my own experience and of which I was reminded when reading this:
Family members could learn from that that good intentions aren't helpful most of the time, especially not for people with ME. I still have to fight some family members' "good intentions" to "help" me, and it was always shocking to see how they don't care that the "treatment" could harm me; I certainly felt pressure to try this or that - and I simply didn't want to waste even more money on treatments about which I knew they were unhelpful, at best. (Of course, unlike in the case described above, those family members wouldn't pay for me.)
 
Inara said:
With the following I do not say that the parents forced their daughter to do LP - it sounds like she was happy to try it and hopeful about a cure.
Click to expand...
But why was the daughter happy to try it? Why do parents, desperate to help their sick children, fall for this guff? Because they are, at an extremely vulnerable point in their lives, being conned by the very convincing marketing guff ... which I thought had been declared illegal?
 
Inara said:
With the following I do not say that the parents forced their daughter to do LP - it sounds like she was happy to try it and hopeful about a cure.

I just say something which comes from my own experience and of which I was reminded when reading this:
Family members could learn from that that good intentions aren't helpful most of the time, especially not for people with ME. I still have to fight some family members' "good intentions" to "help" me, and it was always shocking to see how they don't care that the "treatment" could harm me; I certainly felt pressure to try this or that - and I simply didn't want to waste even more money on treatments about which I knew they were unhelpful, at best. (Of course, unlike in the case described above, those family members wouldn't pay for me.)
Click to expand...
Yes. I think it can be an important part of self care to distance oneself from recommendations and treatment advice from other people who are not health care professionals. But the pressure is very high and turning down these advice might lead to patient blaming; well you obviously don't want to get better.

I'd like to see awareness campaigns for friends and relatives on how to show support and good intentions without pushing patients into alternative treatments, diets that can lead to poor nutrition and so on. I am sure the last thing they want is to put an extra burden on their friend/relative, but that's exactly what they are doing. The only ones who are winning on this way to be "supportive" towards patients are the snake oil sellers.
 
Last edited:
An excellent reply today from Nina E- Steinkopf who is also the initiator behind the petition against the Norwegian Competence Service for ME/CFS (with BPS approach and enthusiasm for Lightning Process)

Nina E. Steinkopf: ME-pasienter har rett til evidensbasert behandling
google translation: ME patients have the right to evidence based treatments

Live Landmark writes in a letter to the editor that some have found it hard to accept that the management of the National Competence Service for CFS/ME has expressed a positive attitude towards the Lightning Process.
Landmark is an instructor in Lightning Process, and has financial interests in that the Competence Service is vouching for the course.
 
Steinkopf is a rockstar!! :D :thumbup:

The need to point out the financial interest might seem weird to non-norwegians, but I think it's crucial to hammer in this point. Landmark has for years been accepted as an "ME expert" and used by journalist etc to give an opinion on all things ME
 
MSEsperanza said:
Apart from that...


...this...


....doesn't say anything but how unlogical Landmark's reasoning is. It is not known who these people are that are active on the forums (sufferers? familiy? carers?) and it is not known what "activity” means (liking a comment?) nor how many pwME are not even able to be active on the internet in any way or have active and passive phases alternately.
:emoji_angry:

Edit:It could also mean that ME online forums have more to offer than other forums and simply are better :angel:

Edit 2: Just to be accurate: @inox checked how online activity was "measured":
https://www.s4me.info/threads/lp-coach-on-research-lightning-process-and-me-norway.5917/#post-107784
They counted posts and calculated the „number of weekly posted messages per 1,000 cases“. So whenever a smiley, a link, or a thank you was posted, regardless by whom, this seems to have been counted as a post.
Click to expand...

Postscript to LP coaches, journalists and researchers who think pwME's online activity
could indicate their activity in general

I usually write my posts offline in several short episodes over several days. I could not go outside and meet friends instead or even do very gentle exercise lasting more than 15 minutes. I am physically not able to do that at the moment. I write some parts of my posts sitting at the desktop, other parts I have to write lying in bed.

When I have better days and am able to go out and meet friends or do some physical activity which takes an equal amount of time as writing the post you are reading now, I need two days with even more resting and restricted activity. Then I am not able to do the 15 minutes of exercise which I do daily at the moment in order to keep my body mobile. Mind that I am only "moderately" affected with ME, nevertheless I am severely disabled. Also mind that some pwME who are cognitively much better than I, might be physically much more disabled.

Furthermore I choose to write these posts because I appreciate the exchange with both fellow pwME and advocates. Having this exchange keeps me sane: Experiencing that I am not alone, learning so much from others, and being able to contribute, even if on a minimal scale, to advocacy work we need to do because there are researchers, journalists, and LP coaches who think, for example, pwME's online activity could indicate their activity in general.

[Edit: Thank you @Trish , @Graham, and @Subtropical Island for helping me with English grammar and wording.]
 
Last edited:
Sly Saint said:
"little evidence that ME patients do less than others"
seriously?

"they have ten times as high activity on the internet as others"

who are these others? presumably not people who are stuck at home with chronic illnesses.

eta: ah found it:
"Individuals suffering from CFS / ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions. CFS / ME online forums had more than ten times the relative activity of any other disorder or condition-related forum."

so not people with say RA, or MS.

eta2: quote is from the 'published research' mentioned in article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365790/
Click to expand...

Yes. We retreat to the internet as it is a "low energy" activity. If we had energy we wouldn't be stuck on the internet.

That comment was obviously made by someone who has chosen not to listen/learn about the lived experiences of people with ME.
 
Snow Leopard said:
Yes. We retreat to the internet as it is a "low energy" activity. If we had energy we wouldn't be stuck on the internet.

That comment was obviously made by someone who has chosen not to listen/learn about the lived experiences of people with ME.
Click to expand...
Sums it up perfectly SL I’m here mostly when feeling worst like today otherwise i would be doing some of the chores that are stacking up waiting for me to have some energy to do them.
 
NelliePledge said:
I’m here mostly when feeling worst like today ...
Click to expand...

This is true for many and at the other end of the spectrum some of us are here only at our best - we feel like company, but are too ill to cope with actually meeting people.

Imagine how many conversations a "normal" healthy person has in a day. From simply thanking their barista to full on complex conversations. All on top of getting washed, dressed, fed & commuting.

Now compare that to how many threads a person might contribute to in a day - for many of us these might be our only conversations in a day.

The more the Landmark creature says, the more obvious it becomes that she has absolutely no understanding of life with a debilitating, chronic illness.
 
Invisible Woman said:
The more the Landmark creature says, the more obvious it becomes that she has absolutely no understanding of life with a debilitating, chronic illness.
Click to expand...

That's not what's happening here - she _does_ know. She has been ill with ME herself and have visited several severe patients by their bedside.

I started writing a post about the norwegian ME-debate on another thread, but maybe it might be better as it's own thred.

It's all about rhetorics.

The norwegian ME-debate is not about having the best argument or arguing your side - it's very much an ongoing exercise in rethorics. Even stating things you know to be untrue, just to try and make your opponent look untrustworthy. That is the main goal of this piece - to undermine ME-patients.
 
"Individuals suffering from CFS / ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions. CFS / ME online forums had more than ten times the relative activity of any other disorder or condition-related forum."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365790/
Click to expand...

They divided the number of messages posted on a selection of Norwegian health forums in one week by the number of thousands of people in Norway who have the condition. This seems to be how they are arriving at ME having "more than ten times the relative activity of any other disorder or condition-related forum."

01. CFS/ME ----------------------------- 11.125
02. CFS/ME ------------------------------ 0.167
03. Breast cancer ----------------------- 0.354
04. Prostate cancer --------------------- 0.039
05. Chronic pain ------------------------ 0.767
06. Back and neck conditions ------------ 0.028
07. Mental disorders -------------------- 0.001
08. Mental disorders -------------------- 0.249
09. Anxiety, depression and dependency -- 0.000
10. Anxiety and depression -------------- 0.001
11. Drug and alcohol dependency --------- 0.210
12. Obsessive compulsive disorder ------- 0.000​

However, when you measure the average activity of individual members by dividing the number of messages by the number of forum members, suddenly the range is a lot smaller and ME comes in 4th place. [Well, maybe 3rd. See below*].

01. CFS/ME ------------------------------ 0.220
02. CFS/ME ------------------------------ 0.006
03. Breast cancer ----------------------- 0.162
04. Prostate cancer --------------------- 0.028
05. Chronic pain ------------------------ 0.743
06. Back and neck conditions ------------ 0.076
07. Mental disorders -------------------- 0.004
08. Mental disorders -------------------- 0.626
09. Anxiety, depression and dependency -- 0.000
10. Anxiety and depression -------------- 1.000
11. Drug and alcohol dependency --------- 0.039
12. Obsessive compulsive disorder ------- #DIV/0!​

The difference is because there are more ME patients on one particular forum (#01), not because they are more active individually. So ME patients (in Norway) may be considerably more likely to join an ME health forum on this list, but they are not, on average individually, the most actively posting patients among all the forums on the list. [In fact they are virtually the average of the 9 non-ridiculous entries. See below.]

*A real oddity of this study is that the list included the two anxiety / depression forums (#9 & #10). The first one had ZERO messages posted during the week studied, and the second had ONE message posted during that time - no doubt posted by its one-and-only member. This actually makes it the most individually active forum at a 1/1 ratio - but I think we should ignore that. :whistle:

Meanwhile, the Obsessive Compulsive Disorder "forum" (#12) had no members.
 
Last edited:
Just to remind people, @Forbin was commenting on that paper because Landmark tried to use it to undermine concerns about relying on subjective self-report outcomes in nonblinded trials:

4. The studies measure only subjective goals, but they must have objective goals
CFS / ME is a self-reported subjective condition, and it is natural to have subjective outcomes. It is difficult with objective goals, such as activity, because there is little evidence that ME patients do less than others. For example, they have ten times as high activity on the internet as others, according to an international published study.
Click to expand...

The study on forum use clearly does nothing to support Landmark's argument, and it's difficult to believe that she's unable to recognise that herself. To me, she seems like a rubbish attempt at a con-artist. Even if ME patients were 10 times more active on the internet per person, that would do nothing to rebut the concern she was responding to, and neither would it indicate ME patients do no less than others. Those who are able to do less physical activity, and suffer from a stigmatised condition surrounded by quackery, might be expected to spend more time on the internet in place of other activities.

We are lacking in good quality evidence for almost everything about ME/CFS, but this systematic review of patient activity found:

The meta-analysis included seven studies and showed a daily physical activity level in patients with chronic fatigue syndrome of only 68% of the physical activity level observed in control subjects.
Click to expand...

http://journals.sagepub.com/doi/abs...id=ori:rid:crossref.org&rfr_dat=cr_pub=pubmed
 
You must log in or register to reply here.
Back
Top Bottom