Lightning Process study in Norway - Given Ethics Approval February 2022

Kalliope said:
Finally I'm able to google translate the first opinion piece in this newspaper from Nina E. Steinkopf and prof. Ola Saugstad from last week

google translation: The ME controversy: Study on Lightning Process at NTNU

The study is designed to have a positive result and is in our opinion cynical, unethical and indefensible.
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The debate about this study continues in the local newspaper to the city of the university, NTNU, who will conduct the study.

This time a professor emeritus (NTNU) with no previous knowledge about ME shares his thoughts and support to the study. His understanding of Lightning Process is that is it a psychiatric treatment method and that those in the placebo group to the Rituximab-trial probably improved due to a caring environment.

Changes in gene expression can cause various somatic symptoms such as fatigue related to mental trauma and chronic / serious illnesses. In medicine, chronic somatic disease is usually a progressive process and poorly repairable. ME is a long-term illness with fatigue, but usually not perpetual. They can get well for no apparent reason.

Vogt and employees have, in my opinion, a holistic understanding of the psyche and soma and can add new knowledge to the project.

ME-striden: Jeg tror miljøpåvirkning står sterkt
google translation: The ME dispute: I think the environmental impact is strong
 
Snowdrop said:
I'd like to here the answer to: Why then would everyone's minds limit themselves to healing only somatic illnesses for which very little is known. Why can our minds not heal other illnesses?
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Obviously it's placebo all the way down. So called 'physiological' treatments like antibiotics and surgery are just highly refined and effective forms of placebo. Illnesses which are currently not understood or treatable just have not found a form of placebo that works.
 
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I wish I could be taller. Perhaps that is my problem. I "wish" to be taller but don't believe that it will ever happen, and that is why I can't increase my height. I don't "believe" therefore I have only myself to blame for being short.

Edit : I was making fun of the BPS magical thinking, just in case there was any doubt. I don't really think that anyone could influence their height by thinking the right thoughts (whatever they are).
 
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Arnie Pye said:
I wish I could be taller. Perhaps that is my problem. I "wish" to be taller but don't believe that it will ever happen, and that is why I can't increase my height. I don't "believe" therefore I have only myself to blame for being short.

Edit : I was making fun of the BPS magical thinking, just in case there was any doubt. I don't really think that anyone could influence their height by thinking the right thoughts (whatever they are).
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When I was about six years old I used to wish I was taller, and over the years, using only the miraculous power of my mind, I became taller. This is probably why some LP investigators prefer to study children, it's easier to get results.

Unfortunately I lost the gift later in life, although I have retained the ability to increase my weight using only the power of my mind.
 
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Snowdrop said:
I'd like to here the answer to: Why then would everyone's minds limit themselves to healing only somatic illnesses for which very little is known. Why can our minds not heal other illnesses?
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You'd get the brush off from many of their advocates and enthusiasts.:

1) Definitions
By the admittance of some of their practitioners, they cannot treat somatic illness e.g. a virus. They define, or at least assertively describe "ME" in a certain way, and a virus or other somatic illness is not "ME"- as "ME" is sth you "do" by staying in an adrenal loop. Thus, they do not have to answer any questions about other, somatic illness since LP "ME" is not somatic illness but somatic symptoms. Since "ME" is symptoms and there is no accepted test, they can justify their use of "ME", and not comment on those with "sth else". For our part, we just have to prove that ME symptoms do not indicate LP "ME" and argue forcefully that they must not be allowed to own the term ME.

(Failure of an ME sufferer to respond to their process is not, in LP eyes, proof that not all ME is LP "ME". To LP folk a "failure" just "shows" that the patient was not (then) in the right frame of mind or maybe had sth else e.g. a virus which is not "ME". They are in the same territory as Michael Sharpe and his "illness" vs "disease" theories and they exploit the space to the max).

2) Proposition is secondary to effect

Dogmatic assertions in LP are not necessarily propositional beliefs but a tool in the process of recovery, as belief, hope, commitment, practice are necessary. "ME" is defined as what they can help with and one size fits all stuff is justified because that is part of the technique. Questions can be put, but the dogmatic description of "ME" is not even primarily/necessarily a propositional belief about ME as a whole, but a technique to address LP "ME", so you won't get a propositional answer - beyond their definition of ME. They just delegitimatise any other use of the term ME and implicitly delegitimatise alternative experiences of ME . Discussion is impossible beyond their assertion of what ME is and "Listen to us or else you don't (yet) want to et better, unless you have another illness, which is not "ME"". Paul G says he listens to those who have recovered. Not much chance for dialogue there, then. He ain't listening. They may actually believe their propositions, of course, but the main thing is how the belief functions, the fact of belief, not whether what they believe is true.Frankness about ambiguities may inhibit recovery, so "best believe it is the whole truth and nothing but....". Propositional engagement as to what ME is, is very difficult, set against this mindset.

Perhaps they will show more latitude in the future than they have, but any apparent compromise might be a means of getting a patent into the right frame of mind, with no real opening up to other insights into ME.

IMO , we must challenge them on nomenclature. That is their weak spot and the same goes for RT.
Neither LP nor RT nor any other monolithic approach has the right to a "patent" on the term ME. They may be able to heal sth, they may even get some positive trial results but they have no right to apply this to an undifferentiated ME. Let them help those whom they can. They may as part of their technique continue to cast aspersions about others not wanting to be well, but they will not be able to identify these "others" with those ME patients who do not do or have not responded to LP/RT, if their monolithic use of the term ME is effectively challenged. They must not be allowed to own the term ME.

I ask whether the LP or RT approach would be endorsed in psychiatric medicine as a monolithic treatment for depression. Depression has altered HPA, sympathetic overdrive, circles of damaging thought, repressed emotion etc . Either LP or RT could put together a case for the appropriateness of their treatment and analysis, but would either get way with a claim that amounted to a definition of depression as the mood disorder which their technique could address in terms of single, universal, monolithic and exclusive process?. The answer would be "No" and the establishment answer should be "No" re LP or any other processes, no matter the merits of any technique from some patients.

Monoliths are the bane of ME imo, but then I'm a splitter not a lumper, though my issue in principle is that up till now the splitting i.e. subgrouping has not been done.
 
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ME is a long-term illness with fatigue, but usually not perpetual. They can get well for no apparent reason.
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That will be exactly like MS then? Though it is called remission and doesn't last. And where did he get the impression it is usually not perpetual? Research has found that only about 5% recover and those in the early years.

When people who are totally ignorant about an illness they should keep their opinions to themselves.
 
@richie

I see you quoted my post. Apologies I am just waking up and can't seem to do a close reading of your no doubt well thought out post. I have scanned it.

If I have understood correctly I expect you are right that they see somatic HPA axis illness as different to others and more amenable to their sort of treatment.

IMO they have a very simple mentality in their understanding of physical processes that will come to bite them in the backside eventually. Perhaps I'm wrong but it seems to me likely that not much is known yet with regards to HPA axis and it's functioning beyond the basics.
 
Snowdrop said:
@richie

I see you quoted my post. Apologies I am just waking up and can't seem to do a close reading of your no doubt well thought out post. I have scanned it.

If I have understood correctly I expect you are right that they see somatic HPA axis illness as different to others and more amenable to their sort of treatment.

IMO they have a very simple mentality in their understanding of physical processes that will come to bite them in the backside eventually. Perhaps I'm wrong but it seems to me likely that not much is known yet with regards to HPA axis and it's functioning beyond the basics.
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Yes, and it is pretty evident in both LP and RT writings that HPA axis and specifically sympathetic overdrive (SO) is what they are on about. But they presume SO is present and equate SO and symptoms precipitated by it with ME. They assert quite different origins for SO - subconscious reaction to symptoms in LP and unaddressed emotional needs in RT - and each claims the correct explanation of ME while both push their own methods as THE way to get better.

I do not say that they cannot help anyone, but they are part as whole people and should be understood as such. But their fundamentalist wings cannot share such an understanding due to the nature of their systems which demand wholesale commitment.
 
MEMarge said:
Esther Crawley's lot still keen on LP.

From https://www.bristol.ac.uk/academic-child-health/grants/

September 2020
Anderson E. RCF - ReCLAME Study - Researching CBT and the Lightning Process for Adolescents with ME/CFS - Preparation of an RfPB Grant Application. Bath Royal United Hospital 1/09/2020 to 11/09/2020 (£4,840)

@dave30th
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Wait they get paid to write grants? Hell this is just to get prepared to write a grant. No wonder they push so many out and win so many. Usually this is all risk and little reward for researchers, months can be spent writing a grant that is simply rejected on lottery. Meanwhile the acceptance rate in ME-BPS research seems excessively high to the point of being suspicious, as if there is no competition and all grants get accepted no matter the quality level.
 
rvallee said:
Wait they get paid to write grants? Hell this is just to get prepared to write a grant. No wonder they push so many out and win so many. Usually this is all risk and little reward for researchers, months can be spent writing a grant that is simply rejected on lottery. Meanwhile the acceptance rate in ME-BPS research seems excessively high to the point of being suspicious, as if there is no competition and all grants get accepted no matter the quality level.
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clearly it depends on which side of the 'argument' you are on


 
The Research Ethics Committees for Medicine and Health Sciences (NEM) have ruled that the design of the Lightning Process study is NOT satisfactory and that the study should NOT take place. It is not possible to appeal this decision.
:party::party::party:

google translated:

NEM believes that the project's greatest weakness is the research fellow's active role in all stages of the project, and the conflict of interest that arises because the research fellow has strong business interests in the project giving positive results. The conflict of interest most clearly emerges in the selection of the participants, which primarily takes place on the basis of a conversation with the research fellow. There is a possibility that the method means that only those who initially have the greatest potential for improvement are included. Furthermore, NEM believes that it is a problem that the selection appears to be based on subjective assessments that the research fellow must make. Should the method and any effect have transfer value, the selection criteria must be objective enough to be performed by others.

If society is to listen and have confidence in research results, it is important that there is no doubt that the researcher is primarily guided by a desire to gain new knowledge in an objective and trustworthy way. Projects where justified and serious questions of conflict of interest can be asked will not be able to achieve the necessary trust. In a controversial field of research, as research on the Lightning process must be said to be, this is extremely relevant.

NEM believes that the measures implemented in the project are not good enough to reduce the conflict of interest and create confidence in the results of the research. In that case, the research will not have the necessary potential for societal benefit.

Regardless of the results of the research, NEM believes that due to the conflict of interest mentioned above, it will be difficult for the research fellow to front the results of this research. The institution responsible for research has a special responsibility to prevent research fellows being placed in such a situation.

The term "sound research" includes an assessment and weighing of both risk and benefit of a research project. In this project, risk and inconvenience have been satisfactorily managed in NEM's opinion. However, based on the combined assessment of the project's design and the conflict of interest related to the research fellow, NEM considers that the project is not to be regarded as justifiable and cannot be carried out in its current form.

source original version in Norwegian

Source google translated
 
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Kalliope said:
The Research Ethics Committees (NEM) have ruled that the design of the Lightning Process study is NOT satisfactory and that the study should NOT take place. It is not possible to appeal this decision.
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Fantastic news!

I actually had to reread that paragraph 3 times to make sure it did say what I thought and not what I thought it should!

Well done to everyone involved in making submissions, writing letters.etc. :thumbup:
 
Invisible Woman said:
Fantastic news!

I actually had to reread that paragraph 3 times to make sure it did say what I thought and not what I thought it should!

Well done to everyone involved in making submissions, writing letters.etc. :thumbup:
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I added some confetti emojis for clarity. This is fantastic news indeed. A big victory for quality in research and a big loss for commercials pretending to be science.
 
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