Discussion in 'General ME/CFS News' started by PamelaViktoria, Apr 26, 2011.
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The fact that you call it "chronic fatigue" in and of itself shows that you have no idea what real ME/CFS is. "CF" is one of the most offensive, understating labels ME/CFS patients deal with.
My PH has been 7.0 on several occasions. I avoid fluoride like the plague. I've tried sleeping at 8. I may feel better doing this, but I am by no means ridden of my severely incapacitating chronic fatigue.
It's not your fault. I believe you were ill. However, I also believe you have no place posting in an ME/CFS forum.
I think that's a bit harsh.
Hi Pamela - pleased you're feeling so much better.
As you may have noticed, we can be a bit touchy if it feels like someone's saying CFS/ME can be easily and consistently cured by [diet/supplements/whatever]. At the same time though, it's really good to hear from people who have been ill and recovered, even if I doubt that the same techniques will help for everyone. Thanks for letting us know your experiences.
"You will recover after you understand what to look for!" Don't say this to ME patients.
I'm on mohoey's side with this one. This story is too fuzzy and treatment is questionable. We need to know what infected the patient and have a rational treatment for it.
I thought she called it Chronic Fatigue because she realized she wasn't talking about ME/CFS, but that there might be some other people with CF around here who might benefit from her experience. I appreciate this thoughtfulness and sensitivity.
Even if Pamela thinks she's talking about ME/CFS, she did say what worked for her wouldn't work for everyone, and it wouldn't be a serious fault of hers, if she doesn't have the information that we get from reading this forum, medical journals, and from ME/CFS organizations. The blame for that lies elsewhere.
One thing for all of us to keep in mind is that CF patients are in the same position we are, regarding how medical persons regard and treat them--that is to say, typically ignore and patronize them. CF and ME/CFS patients are allies as far as our political situation goes.
We also need to keep in mind who the bad guys are here, and it's not other patients, whether they have our same disease or whether other unrelated diseases that are--through no fault of ours or theirs--confused with ME/CFS.
Pamela, sorry about the ruckus here. I'm also pleased you're better. Thanks for trying to help. There probably are some CF patients here, maybe even someone who could benefit from your experience. Many of us, though, have something a lot more like Multiple Sclerosis than like fluoride poisoning. Most of us have already removed toxins and improved our diets. We've tried sleep hygiene, too, but most of us have actual sleep disorders. We're thankful that people care enough to make suggestions, though (or, we try to be, even though, as Esther mentioned, we can be a bit touchy sometimes).
There is something else you could do to help, if you'd like to. You could contact your elected officials and urge them to immediately fund biomedical research for ME/CFS at a level similar to other similarly complex and debilitating conditions, such as Alzheimer's disease, and investigate why this has not occurred in the past--even though plenty of evidence that ME/CFS is a biomedical disease is, and always has been, available.
Just to be clear - I think it's always a bad idea to present one persons experiences a sa treatment regimen to be tried by all CFS patients, and it happens far too often with CFS...
but I can also understand someone who recovered very easily slipping in to thinking "I must tell everyone who is still ill about what helped me so that they can recover too" and being motivated entirely by good will. If I recovered, there's a good chance I'd end up doing the same thing! Best to just read the post as a friendly anecdote, rather than anything more imo. I understand mojoey's reply - but it felt like a rather harsh way of welcoming someone to the forum!
I could have been more tactful but admittedly fell victim to the Touchiness Syndrome.
Certainly Pamela is not to blame, and I meant exactly what I said: that she shouldn't be posting here. Many patients will get offended; severely ill ME/CFS patients (which is redundant) will not benefit from this advice because those of us with the means to try something like this have tried it; Pam will end up with her feelings hurt by people that will say what I said in a multitude of ways.
The fact that there are patients with "CF" here begs the question of whether we should be aiming to provide support group for "CF" patients. This is not dailystrength.org, Patientslikeme, or curezone. This is a ME/CFS support group. Whether we want to expand to accommodate "CF" patients is certainly not up to me, but then the title of this platform (especially now that the domain name is "phoenixrising.ME") should reflect that.
Inviting her to post here is putting her further in furor's way. Being open-minded is not the same as being soft, and being nice is not necessarily the same as being helpful.
you do have a point there, mojoey. all I'm asking is to for us to try to be kind about it
Perhaps Pamela knows she has CF and not CFS and she is speaking of curing CF and not CFS/ME? Maybe?
Alright but only if you let me take a seat in your easy chair
sure, mojoey, you can borrow my easy chair for a while
(that's an alternative to a sofa, of course)
I wish I had one of those nice massage \ calf squeezing \ vibrating \ infrared \ rolfing \ shiatsu recliners like they have at Brookstone (USA??)! It doesn't have all of this but it sure feels like it. The employees at the one locally knew me quite well!!
This is the one I would like to have:
That actually looks like it would be kinda painful August.
Googled the OP.
This post on another forum pretty well says it all --
by PamelaViktoria Sat Apr 23, 2011 7:37 pm
I had cf & fibro since july. I posted how I got over it in the CF thread. You can recover!
People have the right to be cranky with posters like this, they aren't helpful, especially to long-term sufferers who have tried everything..
I wonder if she has any idea that what she is saying is impossible for someone with a genuine case of me/cfs, given that it is a disease and not a "condition".
I agree that this should remain a place for only me/cfs sufferers, not cf ones.
I can not stand by and say nothing about this topic.
very briefly, if you have my kind of ME which is extremely virile and contagious, you will not be posting about recovery.
just another instance of the difference between subsets, i guess; if not subset, then it is something entirely different from what the "seriously ill" patients are experiencing.
whatever; good luck to all of us and i will be welcoming as possible. but when someone who has a seriously debilitating illness hears "i just recovered from it", it brings up the response: You do not have the same illness that I have.
at least we know she isn't looking for community here, so isn't likely to be hurt by our warm reception by copying your tactic, I count 7 different boards she posted on.
chronicfatiguetreatments com already took her post down
curezone org has a couple of people taking her seriously--one doesn't have CF, and the other, fledgling, doesn't say what they have... maybe someone with some energy should establish and account there and tell their CFS/ME/CFIDS section the difference between CF and ME/CFIDS so the people with neuro-immune disease have a better idea what's wrong with them. dry fasting is a horrible, horrible suggestion, particularly for people with orthostatic intolerance.
I feel awful now and need to go do something else
The problem is the way things stands is that CF fits the definition of cfs and then once they find out whats wrong with them and they recover, then they move out of the cfs bracket and are then a recovered from the particular condition it is they have/had, and hind site didnt have cfs/me. It would be interesting to know if there was any viral reactivation going on or NK dysfunction as well. At the end of the day nobody really knows what cfs/me is, although we do, but they cant diagnose it through a test only symptoms.
Its a cat chasing its tail again, is it an immune dysfunction or a viral infection, bacterial infection, retrovirus or a combo, but if we are cured of cfs with antivirals do we a cfs or do we just have a chronic herpes virus????
I just dont know anymore?
I'm ok with people posting on CF if they want; as long as it's in the right place. This is treatment, so it goes in the treatment section. And if there are enough people who want to talk about ICF then make a special section/sub-forum for that. Until that happens, i would say, don't post on this forum. It just creates friction and clutter.
You can also try a Google Site Search
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