i can't be cool

I think this has to be the best bot profile I’ve ever seen on okcupid.

Kafka on the Shore -- Haruki Murakami

Emails, texts and instant messages make it far too easy to wade through old memories and conversations. It happened on this day eight years ago but the memory and feeling is still as strong and fresh as it was back then. I can still remember how it felt to hold you in my arms.

I wish I had acted upon that opportunity then and damned the consequences. Instead, I took the safe option because I didn’t want to risk my heart or our friendship.

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

Those of you who know me well know that I don’t often post about my illness. However recent events have motivated me to make an exception.

When I first was diagnosed with ME/CFS, I was told that the illness was psychosomatic and that I had convinced myself that I was ill when there was nothing physically wrong with me (known as “false illness beliefs”). It should be obvious to most people (with the exception of psychiatrists perhaps) that this is pseudo-scientific nonsense.The only “cure” recommended by medical bodies worldwide was behavioural therapy and exercise.

Undergoing psychiatric therapy to ignore my symptoms seemed stupid and illogical, but I decided to try to exercise. After all, what harm could exercise do? It’s unambiguously good for you, right? Moreover, it was made clear to me by the doctors I was referred to by my employer that I had to comply with their directive to increase my activity levels in order to keep my job. Adding to the pressure, well-meaning family and friends continually advised me to “get over it”, “get out of the house” and to “get on with life”.

Consequently, I exercised for six years. For six years, I pushed through the pain, flu-like symptoms and fatigue and tried to get myself back to work full-time. All the while, I was told by these doctors that I wasn’t pushing myself hard enough. I began to relapse more and more frequently and each relapse was harder to get over. Eventually I was housebound.

Even after this huge setback to my health, these morons still told me that I had to exercise and that I had to return to work in the office within a very short timeframe. I was forced to quit my job because I couldn’t comply with their demands and I no longer had the energy to look after myself, let alone fight them.

Many years later, I decided to look into the literature that supported the idea that exercise was a safe and successful treatment for ME/CFS. I was shocked. It was garbage. Worse than junk science. Even in my severely brain-fogged state, i found a number of methodological errors just in the abstract of the largest and most influential study published in the Lancet, known as the PACE trial. Delving deeper, I came across damning critiques of PACE written by ME/CFS patients and activists. It looked like the psychiatrists in charge of the study had made grave academic errors (all of which happened to bias the results to favour their chosen hypothesis and treatments -- that is that ME/CFS is a psychological illness that can be cured by behavioural therapy and graded exercise).

Compounding the problem, the authors refused to release the data for independent scrutiny of their results. This lack of transparency goes against every scientific and ethical principle. Patients that asked questions were smeared and vilified by these psychiatrists and the media as being violent and unstable.

Luckily, the tide began to turn this year. Academics started to become aware of the flaws in PACE and pressure was placed on the Lancet and psychiatrists to release their data. They refused. However, an Australian patient managed to succeed in an FOI request for some of the PACE trial data after a two year legal battle.

Analysis of that data confirmed what patients have been saying all along. Therapy and graded exercise are not effective treatments for ME/CFS. The biopsychosocial model of illness has been debunked. We have finally been vindicated. The PACE trial is a very expensive, taxpayer-funded fraud.

Why am I sharing this article? I believe that it is important that this information gets out there and unfortunately the media won’t pay much attention to it. There is also a lot of stigma and misinformation about this disease that has been disseminated by the medical profession and it is about time that this is addressed. Most importantly, people should know not to push their friends and family with ME/CFS to “get up off the couch” and they should not exercise if they ever have the misfortune to end up with this illness themselves. Don’t make the same mistakes I made.

If you are a UK citizen, you may like to sign this petition to stop these frauds and charlatans from experimenting with their bizarre therapies on children:

http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/

When your crush starts flirting with shirtless, semi-literate douchebags on social media and shows no intention of messaging you again, it’s probably a sign that you should cut your losses. Even thought she told you not long ago that she’d like to marry you one day, it’s probably safe to say that she doesn’t really mean it. It’s not like she’s ever come through on any of the promises she’s made to you before.

As a consequence, I’m detaching myself from her. I feel like I’m severing each emotion, dream and fantasy I have of her one by one.

‘Detachment’, with its connection to Buddhism, is an interesting word. That it can also mean ‘separation’ seems appropriate right now. At the moment, just saying ‘detach’ to remind myself to let go conjures up the word ‘isolate’. But I think that’s because both words are often the crossword clue and the relevant answer.

It’s not often that my fogged brain can come up with a witty quip or clever observation these days. It’s even rarer that I would even attempt poetry. So it was rather unusual that the following response to a comment from (my always amusing) friend came naturally to me while I was in the shower. After struggling with my own spontaneity and creativity for so long, I was actually rather pleased with it.

Since no-one else seemed to like it (or perhaps people don’t read the comments any more), I thought I’d share it here.

I’m tired of being brave, of having to be strong all the time.

I’m a little sad that you reactivated your profile. I know that I can’t replace him, particularly at this distance, but part of me wishes that you would let me be there for you. I try, but I understand that you’d rather banter with some random stranger online than talk to me when you’re upset. I get it, but it still makes me sad.

Having an over-optimistic, vivid imagination sucks sometimes. Probably not as much as a relationship break-up, but it sucks nonetheless.

Yesterday, my doctor expressed some frustration at my reluctance to see yet another specialist. My doctor is wonderfully caring and thorough and, thus, wants me to undergo dozens more tests, scans, procedures and consultations with more specialists. I do understand that she wants to get a clearer idea as to what is happening with me and to rule out other conditions, but I’d struggle to achieve everything on her medical wishlist even if I was well, let alone now that I’m ill.

As an example, yesterday’s appointment took me out of the house for over two hours when you include travel time, sitting in the waiting room for over an hour and then sitting in the pharmacy while the pharmacist put tiny labels on the medication I’ve taken for over seven years. This jaunt was so tiring that I spent the rest of the day and night in bed and was barely able to cook dinner.

You perched up on the kitchen bench with a glass of wine, nibbling on cheese and olives while watching me cook.

Cuddling up on the couch with you on a cold winter’s night watching a movie. We don’t watch the movie at all; rather we talk quietly and kiss a lot.

Going out with you for a meal and deciding to just have wine and antipasto so we can go home early.

A pet hate is that so many people don’t know the correct spelling for these two words, yet each has completely different meanings.

Only one letter has changed in the following phrases, yet there’s a big difference between “he complemented her” and “he complimented her”.

For example, “his enthusiasm for cooking complemented her love of hosting dinner parties” as opposed to “he complimented her on her quick thinking”.