Does the Lightning Process Training Programme Reduce Chronic Fatigue in Adolescents and Young Adult Cancer Survivors? 2021, Fauske, Reme et al

[SNT Gatchaman]

Ridiculous in the first place to encourage children to ignore their symptoms. If their cancer returns, and they continue to follow the LP process of denying symptoms, early warning signs may be missed.

If these children become ill with something else, following the LP process, would they deny this as well? Where does this stop?

Since CBT and other psychological treatments are considered safe by most people perhaps the assumption is made (without any proof) that LP is equally "safe".

Around a third of my job is the diagnosis, response/complication evaluation and long term surveillance of infants, children, adolescents and young adults with cancer. Reporting change in symptoms is very important for clinical follow-up. There are also objective signals to alert for early/late recurrence: blood markers that can be followed in some solid cancers and imaging surveillance (my area).

At presentation, it is a common situation that the tumour is very large (in a patient that is very small). Think of an iceberg. The thought that it could have been found earlier adds to parental distress. We reassure them that this is a typical feature in paediatric cancer diagnosis and parents will usually indicate a resolve to be very vigilant in the future. This is not in any way pathological - it is very helpful. Unless very young or otherwise unable, the child/young person is also encouraged to talk about changes in their body over time.

Interval surveillance does have a small risk of disease developing between assessments. For the primary disease, local recurrence and distant metastases are the usual concern, but as DokaGirl indicates, other diseases (atypical infections, treatment complications, second malignancies) can and do occur.

Beyond the normal human sensitivity you would expect when celebrating good or breaking bad news, I do not have any special psychological training/insight. However, I would be very concerned that the patient reporting safety net and the therapeutic relationship itself could be negatively affected by such a psychological manoeuvre.

Assuming I can get back to work soon, I will ask my oncology medical and nursing colleagues for their views on this. I would be very surprised if they were supportive.

 

[rvallee]

After all, LP is trademarked and confidential, as far as I'm aware, so how would the approvers know anything about it?

That precisely should lead to any proposal being rejected on this basis alone. I doubt they check, i.e. did their job. They have one job. They can't do that job, so what the hell are they doing other than being very expensive rubberstamps?

 

[Trish]

Thank you @SNT Gatchaman. It's very helpful having the perspective of a doctor who treats this particular group of children. I hope the cancer specialists in the clinic involved realise the harm LP will cause in this context and put a stop to it. Whoever gave ethical approval to this trial must surely be held responsible.

 

[DokaGirl]

@SNT Gatchaman

Thank you very much for your comments and expertise in this field. And thank you for confirming some concerns with the Lightning Process as it relates to children and young people who have been dealing with cancer.

 

[DokaGirl]

Thank you @SNT Gatchaman. It's very helpful having the perspective of a doctor who treats this particular group of children. I hope the cancer specialists in the clinic involved realise the harm LP will cause in this context and put a stop to it. Whoever gave ethical approval to this trial must surely be held responsible.

Absolutely agree. And again, where is child protection services in this, and what was the ethics committees thinking?

 

[Amw66]

Has psychology not explored the effects of asymmetrical power balances for kids and adolescents?

That this crap is continually pushed forward never ceases to amaze me .

 

[Mithriel]

There is also the fact that sick children are well aware of the upset they are causing in the family. When their parents are desperate to try anything that could help the child will be pressured into doing something that they do not want simply to please everyone else.

This is a problem in children with ME in general, that they deny their symptoms because it makes everyone happy.

edit to say. Even adults with ME can find it uses less energy to say they are fine rather than try to convey how they feel.

 

[Campanula]

Has psychology not explored the effects of asymmetrical power balances for kids and adolescents?

I'm sure it has. However, to connect this principle with a treatment program like LP you have to have indepth knowledge about what LP actually entails, something I don't think a lot of the decision makers that greenlight these projects actually have.

I'm guessing they've heard the sales pitch from the LP people themselves (the supposed experts on the intervention) and have some superficial knowledge about it. When they see that academics promote this stuff, they trust their judgement.

I don't think it occurs to many people that certain psychological interventions have a large potential for both psychological and physical damage. There's a myth that they are free of side effects and more "natural" then medical alternatives.

At least in Norway I think there's a sort of ideological resistance in the health care sector towards using medicine to treat a lot of things, especially if you have "natural" alternatives that are "without side effects" that can be used instead.

 

[Sly Saint]

see thread

 

[Trish]

I think also the fact that it's called a training program and is provided by people who may have no knowledge of either psychology or medicine is a huge red flag, when it is clearly aimed at changing thoughts and behaviours. It's not even regulated in any way by a professional psychology body.

 

[Hutan]

However, to connect this principle with a treatment program like LP you have to have indepth knowledge about what LP actually entails, something I don't think a lot of the decision makers that greenlight these projects actually have.

I don't think those decision makers would need to know anything about the Lightning Process or psychology to know it was not a good study to allow. The fact that there were no controls should have been enough. And the fact that outcomes were self-report surveys in an open-label study should have made it a complete no-brainer. The people who approved this study have absolutely no excuse for making a very bad decision.

 

[chrisb]

and what was the ethics committees thinking?

When you consider that one of the people of whom we know apparently works as a post doctoral fellow with the Centre for medical ethics at Oslo, should we be surprised?

 

[ME/CFS Skeptic]

Quote from the paper:

"Prior to attending the three-day LP course, the participants had a telephone conversation with the course instructor to clarify any issues they might have and to allow the instructor to assess whether they were sufficiently motivated to proceed with the intervention. The latter was based on a standard LP checklist."​

 

[Kalliope]

Edzard Ernst's comment:

 

[DokaGirl]

There is also the fact that sick children are well aware of the upset they are causing in the family. When their parents are desperate to try anything that could help the child will be pressured into doing something that they do not want simply to please everyone else.

This is a problem in children with ME in general, that they deny their symptoms because it makes everyone happy.

edit to say. Even adults with ME can find it uses less energy to say they are fine rather than try to convey how they feel.

Absolutely. It is disheartening for family members to hear the pwME is having a bad patch, is never getting better etc. Family plans and ME are a very difficult mix. Long term, it's extremely wearing for everyone. The unpredictability of this horrible disease is everything from frustrating to exceedingly worrying.

 

[Midnattsol]

At least in Norway I think there's a sort of ideological resistance in the health care sector towards using medicine to treat a lot of things, especially if you have "natural" alternatives that are "without side effects" that can be used instead.

Why do you think so? When it comes to typically lifestyle related disease, where in theory first line treatment in Norway is supposed to be lifestyle advice unless it is so serious drugs are seen as necessary, few GP's even know about our "green receipt" for help with diet and inclusion in physical activity centers.

With mental health there have been many reports of people being offered drugs as a first line treatment, even if supposedly this should be "talking therapies". Some have only been offered drugs and no additional help.

There is a movement for drug free psych health treatment, but I'm not sure how most health care workers think about it. LP would fit right into it though (Aftenposten and Dagens Medisin have had some interesting discussion on the use of "Basal exposion therapy" for mental health conditions which with a few changes could be about LP and ME/CFS, I've posted about the articles in the "News from Scandinavia" thread).

This study makes me sad/frustrated.

 

[Campanula]

Why do you think so?

We might have different experiences, but I absolutely feel that there's a sort of irrational bias against medication in some illnesses. Especially among the BPS crowd when it comes to ME/CFS or anything they deem to fit into the MUPS-category. That it's sort of seen as lazy for the patients to want to be treated with medication, and that they are supposed to transcend the illness with lifestyle choices and the power of positive thinking. There's a saying I've heard a lot of healthcare workers in Norway say: "De vil bare ha medisiner!" ("They only want medication"). And there's an implicit judgement in this that they shouldn't be looking for an external solution to their problems, but should somehow transcend it with working on themselves and finding better strategies for "mestring".

I think one shouldn't look at medication and lifestyle changes/diet changes as mutually exclusive, but rather complementary in a lot of illnesses. But there's this false dichotomy i see a lot of places where people think the two are almost mutually exclusive. I think we should use all the tools in the toolkit - especially in chronic, difficult to treat illnesses.

By the way, Nina Andresens last article in Psykologtidsskriftet is an example of what I perceive to be an irrational, ideological resistance to medication.

 

[Midnattsol]

We might have different experiences, but I absolutely feel that there's a sort of irrational bias against medication in some illnesses. Especially among the BPS crowd when it comes to ME/CFS or anything they deem to fit into the MUPS-category. That it's sort of seen as lazy for the patients to want to be treated with medication, and that they are supposed to transcend the illness with lifestyle choices and the power of positive thinking. There's a saying I've heard a lot of healthcare workers in Norway say: "De vil bare ha medisiner!" ("They only want medication"). And there's an implicit judgement in this that they shouldn't be looking for an external solution to their problems, but should somehow transcend it with working on themselves and finding better strategies for "mestring".

I think one shouldn't look at medication and lifestyle changes/diet changes as mutually exclusive, but rather complementary in a lot of illnesses. But there's this false dichotomy i see a lot of places where people think the two are almost mutually exclusive. I think we should use all the tools in the toolkit - especially in chronic, difficult to treat illnesses.

By the way, Nina Andresens last article in Psykologtidsskriftet is an example of what I perceive to be an irrational, ideological resistance to medication.

Yeah, for us lazy malingerers it's not uncommon. You won't hear "they only want medication" if it relates to patients with cardiovascular disease or type II diabetes.

The norwegian word "mestring" for those not familiar with the language, could be translated to "coping".

I must admit to ignoring Andresen.

 

[Campanula]

.
I must admit to ignoring Andresen.

A wise decision indeed.

 

[Kalliope]

Nina E. Steinkopf writes that the study was omitted from ethical approval. How is that even possible??

ME-livet: Study with alternative treatment for fatigue after cancer treatment - without ethical approval

quote:
The Norwegian Regional Ethics Committees for Health Research, REK, state on their website that «All medical and health research projects need prior ethical approval from REK.» (4)

On January 23rd 2019, REK South-East received a request to assess whether the project was required to be submitted for approval. In REK’s response the following day, January 24th 2019, REK considers that the project is not required to apply for ethical approval. According to REK’s assessment, the project fell outside the scope of the Health Research Act and could be carried out without the approval from REK.