Tuesday, November 14, 2006

Experimental Treatments - 2

Okay, I feel the need for a follow-up post. Thank you to everybody reading or getting involved in the debate - either via comments or email. Debate is welcome.
First thing -I don't ever want to deride anyone else's experience of how ill they are (or were) and how much or little they improved. I am humbled when people write to me to try and help me, by spreading the word about whatever path helped them.
I just wish science would help us get to the bottom of this disparity. Is that the right word? This lack of consistency. There are obviously different forms of ME and CFS. My dear friend, Stuart was very ill for several years with crushing fatigue and he recovered to 99%. He never had the neurological / head symptoms that I have, but I don't doubt he had some sort of profound, immune-related illness. Many people suffer terribly and do get better, but a significant number remain ill for life. What is going on?
I would love if any of the mind-body therapies could help me. And I believe applying some of these techniques can help us adjust to life as-is and promote peace of mind, lessen stress etc. But they have never helped my physical and neurological symptoms. (Even beginning a sentence with a 'but' makes me feel like a but-but-but naysayer). And yet... and yet! This is my honest experience and that of thousands of PWME.
When people get cancers there are multi-faceted reasons why some will die and others will live and all the mind-body mysteries are some part of that. One would assume that positive thinking could only help. I read a study a few years back that said it wasn't as big a factor in recovery as expected.
I do advocate being positive as much as possible - whatever that means. Being positive can mean wholly accepting life as is. Making the best of life's randomness.
We really need a definitive diagnostic test for ME/CFS. Will it separate the ME from the CFS? We need answers to these confusions as to why many remain stuck at such low levels of function. And to those who improve: celebrate. There's no reason not to.
-C

6 comments:

Anonymous said...

That is the problem, the diff 'versions' of ME and CFS, and the therapies that are being promoted. It seems the CFS people have the fatigue, but not the other neuro/muscular symptoms. PWCFS seem more likely to recover. I realise that CFS can be disruptive and life changing but it is not the same illness, it is not as severe. And yet even with full-blown ME, there are variations in severity. You and I, C, have different symptoms in some respects, but I don't doubt that we have the same illness, ME as opposed to CFS. Of course, being positive can only help, regardless of what illness you have . . . it would be ludicrous to argue otherwise, but mantaining a positive outlook is not the same as endorsing mind/body therapies as 'cures'. Of course, you can't deny that someone got better from a certain therapy, that is their truth, their experience, but I feel strongly they don't have the same illness that I have been experiencing for 23 years. Perhaps I would not get so angry about all of this if the powers that be would for once and all accept our illness (ME) and stop changing their guidelines. I just feel uneasy and undermined when mind/body cures for ME get media attention. It is detrimental to the whole process of finding out what exactly is going on biochemically with this disease.

Anonymous said...

Hi Ciara, thanks for your honesty. We've spoken many times about various treatments - it's so frustrating that we have no definitive cure-all. I say - if it helps, then good, don't knock it. I've had positive experiences with hypnotherapy - not to cure me, but to help with other mental stresses - it was very sucessful. Reverse Therapy never cured me, but helped improve my approach to my illness - it was a positive experience for me.
When I trained as a reflexologist we were told - never tell a client you can cure them, it's unethical. I agree, a lot of treatments like reflexology and massage help my symptoms, eliviate pain but will not cure me. I believe it's important to evaluate before embarking on new treatments and decide - am I doing this to cure me - or to ease the symptoms?

Amy said...

I think a crucial point in all this is the need to define the different sub-groups of patients with different types of ME/CFS, for diagnosis/management and research.
My anger at the confusion of different types of fatigue with ME is simply because it creates a great big messy diagnostic dustbin which doesn't provide clear or appropriate help for anyone, whether you have classic neuro/immunological ME, or any of the other problems which can cause chronic fatigue (which of course also deserve treatment and support).
I certainly wouldn't want to use not getting better as some kind of badge of honour - ie if you recover your illness can't have been as "real" as mine. I also sometimes wonder about whether some of the "cures" through alternative therapies are lucky spontaneous remissions or recoveries that would've happened anyway - a lucky (small?) percentage of PWME do make a full natural recovery, especially in the first few years of illness.
I do believe that mind-body techniques such as breathing, relaxation/meditation can help- surely reducing the effects of stress and resting deeply can in turn promote healing to whatever degree possible. There's a massive difference between that and a kind of "cure yourself through positive thinking" approach.

Anonymous said...

I once heard a woman with CFS (her term, not mine) say it was the best thing that had happened to her as it had forced her to slow down and re-evaluate her life. After a year out from her job, she had improved greatly through diet & massive vitamin supplements. I was quite shocked that she could see her illness as the 'best thing', but this does not mean I think her illness was less 'real' than mine, but it was undoubtedly less severe. Yet I realised that this was *her* experience, her reality. However, I can easily say ME is the worst thing that has happened to me, but that does not mean I am claiming any kind of badge of honour...that was certainly not my intention.

And of course, mind/body techniques are helpful, but they are helpful for many physical illnesses, not just ME! And yet they are singled out time and again as treatments/cures for ME. Why not lupis and MS too? But ME is still being lumped together with anxiety and depression and stress in the context of these treatments. And that disturbs me.

I am not a non-believer in alternative therapies - undoubtedly, they can ease symptoms, make things more bearable. Years ago, I had intravenous vit C injections, they helped me a little, but the cost was prohibitive & also you can't keep taking such massive doses. I imagine the vit C had some kind of anti-inflammatory effect, but I was not cured, nowhere near it. And I certainly could not be sure it would help someone else with ME. How could I?

I think the government is going in the exact opposite direction from defining sub-groups, it seems we all come under the ME/CFS banner, and all that is going to happen is very ill people are going to become more ill if faced with the regime of CBT & graded exercise.

Anonymous said...

Hi ciara, my name is peter and i have been raeding your blog for a while now. i have had ME for 10 years now and have tried most things ranging from 6 weeks in a nhs psychiatric ward because thats where they treat us types in leeds! to weird and wonderful things like shiatsu, cranial osteopathy, homeopathy and all sorts of counselling. surprise surprise nothing worked. i am currently trying the sinatra regime as recommended by dr sarah myhill, and this is not working. so my view is do every thing that is sensible like no strese, rest well, eat healthy take the vitamins and if you are lucky you will get better when your body is ready.

Amy said...

Hi again Ciara & everyone,
Just to say, I wasn't refering to NMJ's comments, with the "badge of honour" thing - was actually thinking of some other people I've come across (and prob not wanting to sound like I was being like that with my own previous comments - phew! so many poss misunderstandings online!).
And I totally agree about how inappropriate it is for mind-body approaches to be singled out as the only front-line "treatment" for ME.
I was looking at the Gibson enquiry website yesterday (not a relaxing experience), and the psychiatrists who presented evidence on CBT etc say stuff like, "of course, CBT is used in other illnesses like cancer and heart disease...nobody's saying ME/CFS is all in the mind", And I thought, how fucking disengenuous - is there any other physical illness in which providing psychological support is presented as the only/first choice option at the exclusion of all other medical treatment or research?
I too have had severe ME for many years, and tried numerous experimental/private treatments with no success. I think we're all basically in agreement here.