Discussion in 'BioMedical ME/CFS Research' started by Andy, Oct 27, 2017.
In his book he says he thinks CFS is the most appropriate name.
I agree with all you say. My point, as opposed to Perrin's, was that this ME patient unexpectedly found an area of tenderness at a position predicted by Perrin. That makes me think it is at least worth considering whether this is a general symptom amongst all with ME, or within a group of ME patients definable by other characteristics.
My suspicion is that the explanation offered is likely to be wrong, and the "treatment" ineffective, but there may be something worthy of investigation
This was pointed to several times here, and it was what I was spontaneously thinking. It's quite easy to decide "ME - yes or no?" (you could just guess) or to say "sick - yes or no; if yes - which illness?" In my opinion, this makes the study a bit worthless. (I hope nobody feels attacked.)
Although I'm glad I learned something new.
I the news article, the patient Olivia said: "[...] I didn't want to talk, listen or communicate with people [...]".
This may be quibbling, but if I were asked I wouldn't have said "I didn't want to", I always think and say "damn it! I can't". It just popped to me, maybe it doesn't matter.
About treatment, which is addressed in the news article:
I would be SO happy if techniques like that worked. Actually, wouldn't we all? No side effects. I tried comparable stuff (osteopathy included, but don't know whether the Perrin technique was applied) and although it felt good it didn't help, unfortunately.
As someone in the minority corner here, I'm going to assume this is in part aimed at me. I certainly don't feel attacked and I haven't seem anything to suggest that anyone else should either.
Journalists edit what their interviewees tell them. There's a big distinction between saying "my brainfog / headache / pain / sensitivity to light or noise is so bad that I don't want to talk, listen or communicate (right know)" and "I have no interest in talking to people and I want to withdraw socially".
@NelliePledge thank you for sharing your experience with the Perrin Technique - it's interesting to hear directly from someone who has tried things like this. Lots of us have tried different things that may or may not have helped and it's so hard to tell just from our own experience, as you say. I'm sorry you're not so well at the moment.
A study finding similar results
Edited to add prohealth source of the quote
Yes, there are similarities but they're pretty superficial and there is a slight matter of scale.
For the Lightning Process the total cost to become a practitioner is just shy of £8K (although exemptions are available!). Practitioners can then charge - what is it? - around £700 per person per course, all payable up front, no refunds, thank you very much.
Just 430 euros to train in the Perrin Technique? That's pretty good value for professional fees - are you sure that's right? I genuinely thought it would be more. As you point out, only people from relevant professions are allowed to train. Then they charge their own clients per session, about £45 - £70 a pop depending on the length of the session, i.e. the clients may have a longer session with non-Perrin osteopathic therapy as well. Generally, the fee is payable at the end of the therapy, which is how most decent professionals conduct themselves. The client is free to discontinue treatment at any time.
It isn't entirely backwards but I understand the comparison. He is an osteopath, not a physician (or psychiatrist), and he is therefore held to a different standard, like it or not.
Perrin discovered the technique when he was treating a former elite cyclist for a back complaint. The cyclist had been diagnosed with ME/CFS seven years before. After five treatments, the cyclist's back was "better" (whatever that means I take that to mean no more treatment was required) and his ME/CFS symptoms were reduced. He continued with treatment and within two months from the start, he was recovered. And in this instance 'recovery' seems a reasonable word to use because he has been able to cycle again with his former "zeal". [I've edited this paragraph for comprehension.]
So far, so rituximab. A possible connection is noted and interest is piqued.
Perrin started to research the disease. He published an initial paper in 1993 and then embarked on clinical trials. Between 1994 and 2005, he worked in association with the Universities of Salford and Manchester on three trials, culminating in his PhD thesis.
I'm sure he would love to do larger clinical trials if he could get the funding. From conversations I had with my osteopath, which were mentioned previously, he is aware of some of the methodological problems of PACE (and no doubt his own early trials) and wouldn't want to commit similar mistakes.
In the meantime, what should he do? Should he throw up his hands in despair and give it all up?
He doesn't aggressively market his technique, he conducts trials to a much higher ethical standard than Crawley and apparently he has a better methodological understanding, too.
The answer to your questions is pretty much "none", "none" and "none".
Personally, I don't like talk of toxins and poisons etc. All I do know is that the technique is a modified form of lymphatic drainage and I think it's fine for him to speculate about what might be going on but he shouldn't be promoting it as fact. Rather than there being "something in the serum", there may also be "something in the lymph".
Honestly, not at all
That's what I meant.
Again, he's grossly overstating the results to conclude that the tender point is 100% indicative of ME. I don't doubt the tender point exists (many of us have it), but it's far more likely that it's the result of inflammation or another broader category.
Why would that spot only be tender for patients with a specific neuroimmune disease? It doesn't make sense for it to somehow be specific to the pathology of ME (or his "CFS/ME"), and he most certainly hasn't proven that it is. Hence there's absolutely no basic to claim it's diagnostic.
Perrin wasn't involved in this study, the 100% quote was from the authors of this paper.
What does it matter what the cause of the tender points is, it is still a diagnostic marker differentiating people with ME from healthy controls. Criticism of his treatment shouldn't detract from the findings of both studies.
It is difficult to strike the right balance on issues like this.
On the one hand one has to remain doubtful about aspects of the claims.
On the other hand there appears to be an empirical finding which needs to be explained. It might point to an explanation of certain symptoms in certain patients. It might, for example, be interesting to see if there is any correlation with tenderness in the spleen, which some have.
OK, so perhaps he needs to rein in the claims and incorporate a disease control in future studies.
While the Perrin test may be a indicator of the possible presence of ME, it is not reliable enough to be diagnostic. There are a significant number of false positives and false negatives which means no doctor should rely just on this test.
Given that any good doctor attempting to diagnose what is wrong with us should take a detailed history and blood tests to exclude other conditions and to confirm the diagnosis, I don't see any situation in which it would be useful. A much more reliable test is surely to ask about PEM and other diagnostic symptoms.
First of all, sorry for going back to an earlier point in the thread. It's hard to keep up.
1) and 2) would be desirable but they are not necessary. I'd be satisfied with a variation of 3), i.e. that even in the absence of biomarkers, patients can be objectively shown to improve with therapy.
What do we do if the phase III rituximab trial shows a positive result but no one is yet able to demonstrate the pathophysiology? If, for example, 25% have a sustained recovery, 10% recover initially and then relapse and a further 35% show significant improvement, and you had a spare few thousand in your pocket, would you take the chance at those odds? Other than being able to identify whether you are likely to be a responder, does it matter if the agent is not yet discovered?
Actually the 100% bit you quoted isn't part of the paper at all. I'm guessing that was your added comment? Because it isn't 100% indicative of ME, according to the study. They merely found 100% specificity in a small and unblinded study, which also had a big problem with controlling for gender.
The lead author, BK Buri, has omega 3 supplements which have been promoted by Perrin in the past. All of the authors seem to be involved in forensic (criminal) psychology or psychiatry, or abnormal developmental psychology. A bit of an unexpected team to be doing this research, apart from Puri's connection to Perrin.
Yes, but he relies on 1 and 2 to sell his therapy. If he can prove that lymphatic massage cures ME (he hasn't), he should stick to that. People want an explanation, especially with lack of evidence for the efficacy of the therapy, so he has created one which provides a false sense of a scientific basis for the therapy.
More likely what sells his therapy is direct recommendations from one patient to another and the MEA treatment survey.
No I copied that from the ProHealth website coverage of the study
Apologies for the confusion.
Sorry but I've only just got around to the abstract!
How did the first sentence of the conclusions get past peer review? It only improves accuracy if you remove the one vital piece of the picture in clinical practice for the osteopath and the physician and they kind of allude to this in the final sentence in the full paper:
OK, it's taken me a while because of the order in which I've done my reading but I'm starting to understand why it is misleading.
Separate names with a comma.