Nietzsche quote*
I caught a glimpse of Hope standing naked. I was alarmed by the strength of my desire. It was tempting fate and awoke irrational superstition in me. I didn’t dare believe that Hope would reciprocate the strength of commitment I felt. Although I love to spend time around Hope, experience of her mercurial ways has taught me well. She has again withdrawn her attention, after an unexpected argument, and I am left reeling.
Anyone living with chronic illness has a complex relationship with Hope. Over the last couple of weeks mine has been so tumultuous that we could be beyond speaking terms soon.
Faith
Do you share my experience of having both logical and irrational beliefs about claiming improvement too quickly? Both styles of thinking make hope tricky to deal with.
It is hard to accurately chart cause and effect. Mostly what we notice is correlation which can be irrelevant. There are also so many complex factors, how do we know what’s what? I find I’ve become superstitious about claiming improvement. This isn’t about fear of looking foolish, it’s actually believing it tempts fate. I know it is irrational, and I don’t want to be irrational, but it’s still there.
Last week, for the first time in five years, something felt different in a way which gave me faith that I could substantially improve. It is hard to put in words, something like a burst of energy. From my last couple of posts you know that I have been feeling substantially worse, so this was unexpected.
This winter marks 20 years since glandular fever triggered my ME. At times I have been almost-recovered so I know this is possible, but for the last 5 years my body has not been responding to the Pacing techniques which worked before.
There are a few potential sources of this possible improvement, or it could be random and fleeting. A reasonable explanation is I have started fludrocortisone and this combined with existing drugs to lower my heart rate seems to be adequately controlling POTS for the first time. I have recently become stricter about Pacing. There is some logic in thinking that POTS has previously been preventing Pacing from working. But the reason isn’t the point, and I’m not feeling great right now, so this post shouldn’t be misread as an announcement of substantial improvement.
As Nietzsche describes, unexpected improvement can feel like an attack of hope. This is very different from fear of being well. If secondary benefits are a thing at all, I have been shortchanged. When I was almost-well it was an improvement in quality of life in a myriad of ways and I have no fear of returning to that. I am afraid of daring to believe in an immediate improvement or recovery and being wrong.
Hope
I know some people with chronic illness prefer to simply accept things as they are: there isn’t a cure or effective treatment and never will be. This isn’t a state I can live in either. The thought of a further 20 years of no progress isn’t something I can live with and retain my mental health. For the medium term future I need to believe there’s an end in sight.
For the last few years Rituximab, as a potential treatment for ME, has held this psychological function for me. It performed very well in Stage 1 and 2 trials, including a blinded one. There seemed to be a pattern of 1/3 remission, 1/3 improved, 1/3 no change. It was therefore a shock to hear this week that the Stage 3 trial was null. I had expected it might not be quite so positive but the null result has caught me out.
There are some who would say that expectations of Rituximab were hype and irresponsible with patients’ emotions. This is entirely different from what I’m saying. I’m saying Rituximab was sustaining my mental health. It was an anti depressant without needing to take a pill. If that hope hadn’t existed I would likely have felt despondent all that time. Instead I lived with a sense of ‘this isn’t for forever’.
I need to find ways to process my disappointment now and you may need to too. Comorbid depression with ME sounds horrendous, so I need to do whatever I can to prevent disappointment turning to depression (which as an illness may not always something we can consciously prevent).
Firstly, I think it is worth acknowledging the disappointment. It is a type of grief. We have to go through it, it can’t be avoided. For many of us hope in Rituximab was important sustenance, and it may not be helpful to try to persuade yourself that this was a minor setback. If you are experiencing disappointment, rather than depression, confront it and it will pass.
We need to look at other advances in research. There other drugs being tested. Understanding of the disease process is progressing. None of this is equivalent to a successful Stage 3 drug trial, but the research isn’t stagnant or hopeless.
Now I need to find a new source of hope to keep me going personally for the time being. Something that seems separate from ME, and so something that might be improved with diagnosis and treatment, is my movement problems. I had an abnormal EMG test but haven’t got any further yet. Periodic Paralysis is something which fits my symptoms so I’ve sent off my DNA to a lab (I’m actually getting my whole genome analysed rather than just pussy footing around with specific SNPs). So for now I’m putting some hope in finding something useful from this. I’m fully aware that this could backfire!
Charity
Now more than ever, it seems important to invest in research you believe could make a difference.
Suggested research charities:
Donations to the Open Medicine Foundation until the 28th November will be tripled (I read somewhere they can be quadrupled on 28th but can’t find that now)
ME Research UK, they also have Christmas cards
*Thanks to Charles Turner for reminding me of the Nietzsche quote and Invest in ME for the Luther King quote.
If you engaged with this post you may also want to read:
My post about a crisis in ways of knowing the truth in ME
10 insights on life from the perspective of living with ME
Dealing with adversity using Modern Stoicism tools
Tips for ME 
I for one wasn’t surprised in the least that the Ritux trial failed, and feel badly for those who apparently put all their hopes on the drug.
I just could never get it out of my head that that original patient or patients also had cancer…something that the vast majority of ME/CFS patients don’t have, and also something I think would disqualify someone from a diagnosis of ME/CFS, but it could be that they were misdiagnosed.
I’m glad you’re looking into alternatives, as they are out there. No, they haven’t gone through double-blind trials, but most non-drug items don’t get taken seriously, nor get the funding that pharmaceuticals do.
But there is ample evidence for mitochondrial nutrients (different ones depending on the patient), and different types of probiotics, B12, carnitine, etc., if one dares step outside of the notion that only drugs will cure disease. I know of no drug that rebuilds the body or restores mitochondrial function.
I’m not a doctor of course, I’m just a patient. But I know other patients who are improving by taking a more wholistic or integrative approach.
Best of luck.
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The original serendipity of the cancer patient was they had pre existing ME and that also went with cancer treatment. ME doesn’t make you immune to cancer unfortunately and cancer as a broad category is common.There is also some theory why it is plausible, but that doesn’t matter now.
In20 years it was the only thing that seemed plausible as a proper treatment which put people into remission. There are plenty of things which help people relieve symptoms, but this was in a different category, so important to accept that lots of people are feeling this deeply this week.
In other posts you’ll see I do try different things. Eg the one about walking problems has the various mitochondrial supplements.
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That’s https://tipsforme.wordpress.com/2015/10/19/resource-walking-problems/
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Thanks for your reply Jenny. Again, I just wonder, but don’t know for certain, if the original patients had ME or had severe fatigue from their undiagnosed cancer? I guess we’ll never know.
I guess we’ll have to agree to disagree on certain things, but that’s okay isn’t it. I didn’t see Ritux as something that put people into remission. Maybe temporary remission, but not true remission, except maybe in one or two of the original cases.
And regarding relieving symptoms: Well, what are symptoms, but symptoms of the illness. So anything that helps relieve and possibly reverse some symptoms is just as legit as any drug imo. B12 is a good example. It can actually reverse symptoms often mistaken as those of multiple sclerosis…
I’ll check out your other post, thank you.
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I absolutely love this piece, it’s so well written and poetic and spot on!! I can fully relate to all of it, even the rituximab. My first time round it was also a semi aid. Then the second time it gave me an anaphylaxis reaction. Each time t costed ~$7000 here. And yes anyone with a chronic illness becomes a little messed up with ‘hope’. I had to get psychological help at one time even. Thanks for writing this piece…will share everywhere xx
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