I am taking a bit of a leave of absence for a little while. I am feeling awkward about posting at present.
A post of mine warning people to be wary about homeopaths and particularly one homeopath who uses cheetah’s blood to treat MS was seen as a breach of the T&Cs and so removed.
TBH I don’t really understand why this is a breach but none the less that is the decision.
But while I feel so constrained and unsure of what I can and can’t post I am bowing out for a bit.
I will still be checking my PMs for those who want to keep in touch and I do plan to return but I just need some time out.
i have read many of your posts-some agree and sometimes dont but i have no doubt whatsoever that all of your posts are made with the best intention.
some would say nosey-i say i am naturally inquisitive! however my computer skills are just above non existent and am grateful for u and others that post re the evidence stuff. whether i choose to ignore it or follow up on it is my decision.
i understand totally the decision to have a break-enjoy the festivies in your own way.
catch up with u next year-hoping its a better one for you.
I did read the “Cheetah” post, and will be studying the T’s & C’s later, to see exactly what it broke, as it’s not immediately apparent to me.
I thought it was quite a timely warning.
The only thing I would say is that IF anyone hadn’t read through to the end, it might not have been clear it was a warning, and might have been seen as promoting the very hokum it was cautioning against.
I realise that if someone doesn’t take the time to read and understand properly, that’s their problem, but some folks are impervious to satire. A few will only read: “I saw this thing on the TV about cheetah blood…” and be Googling how to sign up!
I DO think the vast majority here are more discerning, but I guess they have to protect the lowest common denominator - those who might miss the point.
I’m thoroughly confused why your excellent, thought-provoking and generic post warning people to be wary was removed. It certainly did not break any t&c’s that I could see.
Unless, surely no one thought it was a personal attack? That would be a very strange conclusion because no one’s been selling cheetah’s blood on here have they?!?! Unless it was the general information you provided on what constitutes “quackery” and “shilling”? But surely only a shill wouldn’t want that to stay on the forum?? How baffling!
Did you know that someone accused me of being a shill the other week? I thought it was funny so didn’t complain - after all, I know that I am not a shill! Maybe I won’t take it so lightly next time mind you. It doesn’t seem fair that they got away with it, if a gross overreaction to an imagined attack results in your post being deleted!
Please make the time out a very short one Belinda. You will be sorely missed.
Belinda, know that your well thought of, your advice, sharing your life with others and helping so many, youll be sadly missed, but please do come back.
I would add we need to be made aware of charleton treatments, hence why was it removed? Im baffled as you are.
Take time to rest, unwind and have a stress free time over the Christmas period. I wish you well & a happier New Year.
NOOOOOOOOOO! Not for long anyway - and certainly not because of your post being stopped. You, more than many, should definitely NOT feel awkward about posting. The mods were wrong here; they took a bad judgement call but that’s not you being in the wrong. Move on and carry on with confidence - hear what everyone is saying.
And the silver lining to this cloud is I’ve learnt what a shill is - had never heard of that word before!!!
There are three big problems with interweb forums:
The half of the message that normally gets conveyed in face-to-face interaction is absent - body language, intonation, facial expression.
You’re prone to any shill, charlatan or genius visionary that comes along with a story you want to believe in.
You are always open to attack from quasi-anonymous keyboard warriors psyched on their own self-importance and abilitiy to agitate - or get taken down in friendly fire by a mod who lives on a different wavelength.
There are three big problems for the constituency that believe to their very core in the scientific method:
A. You don’t know what causes MS
B. You haven’t found any methods for rolling it back
C. You haven’t found a cure.
There are three things that anyone faced with these problems can do:
i. Take a break - a week or two - to regain perspective
ii. Be open to all new ideas, don’t block them out or lock them up; but scrutinise, challenge and skepticise - and make your own decision.
iii. Make a pact with yourself never to “catch feelings” from those you interact with on an arms-length basis.
Brog is taking that i. option, which is entirely sensible and admirable.
Oooh, I like you Skel, (although I’m sure that’s DK in the picture). I took a leave too as things were getting personal and upsetting.
If you find yourself thinking of the great and clever answers that you could be writing to (in general those who don’t have MS) people who like to wind others up, or have an agenda, then it’s time to to something else for a few days.
I liked many of the sentiments you expressed but I couldn’t let the above bit go unchallenged.
In my view, without evidence based medicine NOBODY will
A. ever know what causes MS
B. find the methods FOR rolling it back
C. find a cure
Evidence based medicine and science are the only ways we have at our disposal to methodically work through what is an incredible complex puzzle. The alternatives of trying some of this and a bit of that based on anecdotal evidence and testimonials will result in years of going up and down blind alley ways with no clear method of collecting and analyzing the information and of holding out false hope to people with MS.
It is. of course, very easy to point a finger at those who believe in the scientific approach to medicine.
It is just as easy (and accurate) to apply points A, B, and C to a very wide range of “alternative” approaches.
So let’s look at what the scientific method really is:
Observation > formulate a hypothesis > test the hypothesis > analyse the test results > revise the hypothesis > re-test, etc. Testing a hypothesis should produce results as predicted by the hypothesis.
So let’s look at a few of the alternate approaches:
LDN This is quite clearly in the Observation stage. There is a lot of anecdotal evidence around, but where is the testable hypothesis?
CCSVI An observation led to a hypothesis. Subsequent tests have not produced a clear result (See the current MS Matters). Coupled to the anecdotal evidence, testing continues, and I would expect revised hypothes(es) to follow.
TMJ Yes, there has been a lot of discussion about this of late, but as yet it does seem to still be in the observation stage.
HBOT This evolved from a way of treating decompression sickness in divers. So there has been observation, hypothesis, testing, a revised hypothesis and a mass expansion of HBOT into the MS Treatment Centres.
OK, so I have just picked four - but have any of them answered the three points made by skel - the answer must be NO.
Now, let’s go a bit deeper:
We know that LDN has been of benefit to quite a few people - it needs a hypothesis and some formal testing. It is just possible that formal testing could discover something that would lead to a major advance in the knowledge of MS.
We know that treatment for CCSVI has been of benefit to several people, but also that it often needs to be repeated.
We know that HBOT has been of benefit to some people, and not to others.
And taking just the last two, do they not suggest that the blood oxygen level could be worth further research?
Turning to another direction, let’s consider some of the other, normal, treatments for MS:
DMDs have been shown to reduce relapses in people with RRMS. You can work through the scientific method and say that observations of de-myelinated axons have led to hypothes(es), have led to development of a DMD, have led to tests. On the basis of this, it does seem futile to deny that the problem is with the nervous system. If MS developed only in the brain, one might speculate that low oxygen levels might have something to do with it (and look some more at HBOT and CCSVI). But it can also develop in the spinal cord. So the cause could be something else. So how about a defective auto-immune system. So the beta-Interferon based treatments, Copaxone, and Natalizumab, are all based on a hypothesis that assumed an auto-immune problem. They all work, and when prescribed appear to produce results as predicted by their trials. LDN also seems to work - but LDN has not been formally tested. We also have Fampyra as a supposed aid to walking. This too assumes a problem with neural impulse transmission. Unfortunately, under tests, Fampyra does not appear to produce enough improvement to justify its use - but it works for some people.
What those of us with some knowledge of, and training in, the scientific approach do tend to believe is that to deny that any of the treatments available under the NHS work, and that only a specific alternative therapy will work, is doing no-one with MS a service. To deny that MS is (probably) an auto-immune problem and that only another specific alternative therapy will work, does not serve the MS community (but it might serve the provider of that specific alternative therapy).
So, if you want to live without science, there are still some wilderness areas on this planet where you can live as if it were the stone age. tht’s right, no knives, no axes, no matches, no sleeping bags - they are all products of science. When you find that you can light a fire with a spark struck from a flint - and you can repeat it - you have started to use the scientific method.To be helpful, I will give you two hints:
The earth is not flat.
The sun does not go round the earth.
And it took science to determine both of those facts.
Damn, there I was agreeing with you. Lots of us have had MS for years and are open to all suggestions. However, now that I see EJC has returned I’m off again.
This is a forum for Everyday Living. People with MS can chat to each other and swap ideas, anecdotes, thoughts - whatever.
Occasionally people with an agenda turn up and cause havoc and stress to us.
EJC is one of those and I’m not staying here as the very sight of his name makes my hands shake, my legs wobbly and my stress levels go through the roof.
I have MS. I don’t need stress from people who don’t even have this damn disease.
Sam xxx