While the LP- debate continues in many directions, lets not forget the very basics. Never forget what I label as the (causation) model behind LP. Calling it a flawed model is to weak. In all its absurdity, it is a fake model. A fake model is dangerous. LP promoted as some sort of remedy for ME is ludicrous. Everything spinning out of a fake model, hereunder a study, should come to an immediate stop when trying to connect LP and ME.
Don’t claim to know the cause of ME. Also avoiding to much speculation. Fine. So what are the strengths of patients? Well, we know a whole lot of how our body and mind works before disease and after, know how we have dealt with and deal with it, and many patients have also experienced LP. In total, there are many experiences piling up to a lot more than an anecdote here and there. These patient experiences are worth paying close attention to.
What patients, professionals and anyone that have a clue of humans and human nature know, is that the fake model of LP for ME-patients, at least a major subgroup, is utter nonsense. It not just a little twisted, slightly missing, but exactly the opposite of how some subgroups within “ME” think and act. That’s really something that many should think about for a minute or two? People who have interest in the wellbeing of patients should take a very close look at the model for LP when carrying out their work, when giving thumbs up and a blessing to a study or whatever. Everything should stop with the model. Period.
It is also very important that patients considering LP based on a recommendation or any other reason, take a close look at and consider the model, the very basics of LP. If you are an ME-patient that has no motivation at all, no guts, constantly talk to yourself in a negative way, focus constantly on symptoms, believe that you cannot do anything at all, well then LP may be something for you. If not, stay away!
But who are these people that the model of LP describe? They are not ME-patients CCC with PEM as cardinal symptom.
1. They present a model that has no resonance whatsoever for the majority of patients. Isn’t that strange? What do these people make of that? Still they present a model merely created out of very bad attitudes, little knowledge of humans and speculation, - that has no evidence to it. What about sorting out the absolute basics before proceeding?
2. There might be exceptions to the rule of how the majority of patients approach the ultimate “challenge” called ME. But if so, they are in great minority, they don’t represent the majority of patients who have approached disease in the most positive and sound way. The majority of patients “think right” and have done/are doing exactly what the “society” and medicine expect them to do. Keep calm and carry on, no matter. So that’s exactly what patients have done.
3. Then it must be stressed and underlined that a lot of data and experiences, tell us that the «go on no matter what»-approach not was the correct approach, especially not in the initial phase of disease of ME. Another thing to think really hard about, - that what medicine and old dogmas told patients to do, made them much worse.
Patients doing exactly the opposite of the LP-model have paid a heavy price when actually trying to carry on at/over limits. That requires all the motivation in the world, ignoring and living with symptoms and a great deal of resilience to deal with adversity and PEM. The cost is priceless. Patients still might be ghosts of what’s considered “normal people” and functioning, but they sure as h.... have used every positive output of the brain and muscle fiber to carry on. That’s the truth. Then to be told by a fake model what’s wrong and the totally opposite of how things are, well, that’s interesting.
4. Many of the same patients as in number 3 over, have also added LP, often because health is destroyed, help and/or advice are zero and the willingness to get healthy/healthier means more than anything. So how does it work adding LP to an already great mindset which is not part of the problem whatsoever? It should surprise no one, that more of what you already are doing, pushing beyond limits, can and will cause harm. They already experienced harm simply by carrying on. LP on top of this is a no-go and recipe to disaster.
5. Despite this, the many experiences are totally ignored, instead taking a few positive anecdotes and highlights them, as some kind of “evidence” that it could help all. That’s a blatant lie, but they don’t care. They know or must know about the different subgroups within “ME”, and they know or should know that LP can be dangerous to many patients. LP may have side-effects way stronger than any drug, if “prescribed” to the wrong patient
As started. The fake model of LP to ME is dangerous. Many people should take a long hard look at it. How is this possible? Could this really carry on? STOP!
