The Guardian: I gave up hope of a cure for my chronic condition. And it’s made me happier than ever before

Opinion piece by Keith Kahn-Harris.

For 30 years, I tried to ‘fight’ it. In the end, I found relief in embracing my identity as a person with a disability.

In my second year at university, I came down with the Epstein-Barr virus, and I expected to fully recover. Sure, I knew it would take longer than recovery from a bog-standard cold, but no more than a few weeks.

At first, my optimism seemed warranted. It was the Easter holidays and my parents took good care of me. The fever only lasted a few days and I was out of bed within a week or two. I made it back to university for the summer term; the only difference was that my parents carried my belongings from the car to my room.

That was 1993. I was 21 years old.


It is now 2022. I am 50 years old. And I still haven’t fully recovered. I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the diagnosis you get when you are constantly pursued by exhaustion and doctors have ruled everything else out.​

The rest: https://www.theguardian.com/comment...pe-cure-chronic-condition-identity-disability

 

I wish we had an answer to the basic question, can timely rest/convalescence help prevent post viral conditions becoming chronic.

My experience of acute EBV infection (glandular fever/mononucleosis) in my thirties was fighting to return to my active life, two weeks in bed then two weeks at work and so on, with no clear distinction between the end of the glandular fever and the onset of my ME. Some thirty years on the rest is history. In contrast when my niece got glandular fever, her mother primed by my experience and the experience of two friends’ children, immediately insisted my niece took a year out of university. She had a number of months at home being waited on, then spent six months in France improving her language skills before returning to her degree course. More than a decade on she is living a full and busy life with no long term consequences.

It is possible that my niece headed off ME, but it is equally possible that nothing either of us did had any impact on our subsequent health. Indeed, if you look around it is also possible to find individuals who convalesced, improved, but then subsequently relapsed on returning to their ‘normal’ lives. It is frustrating that we don’t have an answer to this basic question.

 

havent the strength to say more, but i thought it was a good piece, i didnt cringe once, which is unusual lol.
Nicely done Mr Kahn-Harris

 

I feel like I've encountered his work before. The name rings a bell. It's a decent article, though. I think it's a nice rejoinder to the 'but we must give patients hope' clinicians.

I think many patients do want some kind of hope -- but it's not hope in some treatment that won't work.

I have seen a lot of hope after the NICE guidelines, for example. Despite catastrophising BPSers claiming it was a pessimistic guideline.

So it's definitely not hope for recovery. But it's a hope that we can shift the balance, change perspectives and not have to constantly fight.

The constant fighting is one of the worst things about being a pwME (besides the illness itself). The BPSers overlook that.

And the fight isn't just against the BPSers. It's fighting the illness itself.

Remove the fight (or part of it) and... God, does that feel freeing! Even if it's just a small reprieve.

 

This piece struck me as rather naïve, as Kahn-Harris has not suffered from severe or very severe ME throughout the course of his illness.

While he enjoys some quality of life, the most severely affected patients do not and have to cling on to the hope that a treatment will eventually come and give them some of it back. Many have hoped so for years or decades while they have been under tremendous duress (and still are everyday). Those who lost hope somewhere along the way are, tragically, no longer with us.

He does acknowledge that “hopelessness is a privilege”, but surely leaving those who are permanently housebound or bedridden as they are is not a remotely acceptable answer. At all.

In fact, I am concerned to see that this piece will make hopelessness — or rather resignation — seem like an acceptable consequence of being severely ill with ME. Would this be accepted for a well recognised disease like Alzheimer’s? I certainly do not think so.

Edit: I realise I am giving Kahn-Harris a hard time, especially given that his piece includes two caveats about severe ME and is otherwise better than what we are used to. It is simply frustrating that we are in this situation where there is so little interest in treating, let alone curing, ME that we are forced into giving up hope.

 

It might *help* prevent, but most people don't do any sort of significant rest/convalescence and don't develop ME/CFS, which would suggest there are more powerful factors at play—ones that we might have little control over, such as genes and our microbiome.

 

Many people Can't do "timely" rest/convalescing when they are first sick, unless they want to rest/convalesce in the gutter. Jobs, rent, mortgages, children, and without a diagnosis no means of staying off work for any length of time without risking their job. Most people don't know what the hell they've got during the early weeks/months/years and don't know that resting is so vital. Many people have no one to look after them.

I have given up hope of any effective/moderating treatment within my lifetime. Too old to take part in studies. ME is joining up with old age and I don't have hope that I will be treated with care and respect ever. I dread having to go into a care home. At least at home on my own no one is trying to impose their beliefs about my disease on me, I don't have to open the door to anyone, so no one can see that I can't cook, or wash up, or bath, or hoover more than a square yard occasionally. After early years of abusive professionals and abusive others I fear being reliant on others for my survival, of others presuming to dictate what's best for me.

KKH's article is about him. His thing about giving up hope is about how he feels. My hope that I used to have but am now too old to maintain, is about how and if I function, whether I can access pain relief medication and get developing medical problems believed and addressed, hope that I will be able to look after myself even poorly and maintain independence in the coming years, which are nearly here. I have not given up hope for breakthrough treatments for everyone else.

I found the article very unhelpful. And unhelpful for the general public, too few of whom realise what a serious and disabling and painful disease ME is, or how much abuse ME sufferers were and still are subjected to.

Hope is a lifeline, lifesaver.

 

It's a very interesting piece.

"Yet here’s the kicker: hopelessness is a privilege. If my condition was just a bit more severe, my life would be miserable. If I wasn’t married and didn’t have a supportive family, I would be in penury. If I hadn’t chosen a career path that has some flexibility, I would be in a very difficult position.

Giving up hope requires a safety net. The challenge for our society is to enable others with chronic conditions and disabilities to give up hope without giving up everything else."

 

I am less than convinced that giving up hope is useful. I think it isn't. However I do think that giving up on expectations is helpful. Hoping for a treatment, cure or recovery is fine. Expecting it is problematic. If I had realistically considered that I would not recover in my planning I might have taken a different path, and I might have supported medical research and ME political activism more. Mind you I became an activist in 1993, and had by then already volunteered for two different medical studies as a test subject, and maybe one non medical study though that may have been later.

In particular its false hope that is bad, and most of it is false hope that we are offered. We are prey to promises that many doctors, and salespersons, and even researchers, take advantage of. Yet the line between hope and expectations is blurred. The two studies I was in to that point were hopeful, but it would have been a problem if I expected answers rather than just hoped for them. I learned I have a non specific marker of muscle damage but no obvious damage, and that I do not have a particular genetic disorder that can cause something like ME. So my backing medical researcher offered hope that we might learn something but if I had really expected a cure it would have been a real issue for me.

When I finished my bachelors degree in IT I might have been better off taking a part time job as a programmer, and not expected more including expectations that I would not get worse, and holding expectations that I would improve if I could just find the right treatment.

What drove it home for me was finding my shotgun protocol, that completely restored my energy and capacity for exercise. Fantastic. At a cost of $100 a week in 1999. Then the side effects set in, a migraine that returned each and every day. I realized I did not have the capacity to figure it out, and went back to university to finish my biochemistry degree, and put my shotgun protocol on hold.

Right now many with LC and new ME patients, and those with other related disorders, have a positive expectation that they just have to search hard enough for a cure. So they keep looking. While they are doing that they are often not acting to push new medical research or advance ME politics. They are often not choosing a path that will both allow for improvement and allow for decline. The uncertainty is bad. Improbable expectations are worse. Hope is a lifeline.

 

Yes

 

Kahn-Harris has had several previous commentaries on ME/CFS published in the Guardian.

Here's one from May 2008:

https://books.google.co.uk/books?id=w7wJAwAAQBAJ&pg=PA20&lpg=PA20&dq=Keith+Kahn-Harris+ME/CFS&source=bl&ots=Hxg2ABobaB&sig=ACfU3U0rb0ZQVzmeGTLlmY2nqadJ9binZQ&hl=en&sa=X&ved=2ahUKEwiI6_2Qqpv5AhVIecAKHdncC9YQ6AF6BAgTEAM#v=onepage&q=Keith Kahn-Harris ME/CFS&f=false


Another from January 2009:

https://www.opendemocracy.net/en/the-politics-of-me-me-me/

The politics of ME, ME, ME

David Hayes Keith Kahn-Harris

-----------------

You'll need to scroll down to the heading:

A medical parallel

"A dedicated group of activists has committed itself to the exposure of any trace of psychosocial bias. The campaign is relentless. On message-boards, blogs and other websites, any accommodation with psychs or deviation from this fight is instantly attacked. Any ambiguity or error in the statements of members of ME charities and the medical establishment is pounced on, deconstructed and treated as sinister. Lengthy, minutely detailed “dossiers” are compiled and presented with an accusatory seriousness.

"An indication of where this leads is suggested by a blog such as ME Agenda. Over the last few months, many of its posts have concerned accusations of “betrayal” at the Countess of Mar, the patron of a number of ME charities who has apparently “gone over to the other side”; other posts have consisted of an impenetrable series of claims and counter-claims surrounding the actions of the chair of the Peterborough M.E. & CFS Self Help Group. To the outsider, such controversies are bewildering or irrelevant. They exist as a self-enclosed world in which the real issues surrounding ME have degenerated into a Mobius strip of controversy. Whoever might or might not be “right”, the real need to move forward in addressing a terrible condition is all but forgotten.

"A politics beyond solipsism

"The politics of ME - the illness - demonstrates that the insular internet-driven combat that influences so many arguments over the middle east are now replicated in other fields. People equipped with the requisite background or expertise - for example, those few who (like one of us) are both committed Jews and persons with ME - might have the knowledge necessary to understand the political contours of these two particular controversies. But in the huge number of other controversies where an individual's knowledge is more limited, the possibility of understanding, being persuaded by, or much less participating in them is much reduced if and when they descend into internet-driven cliquishness and circular backbiting. The day may be fast approaching when all politics will look like the middle east - and the only responses available will be either to join in the maelstrom of bickering or (more likely) to shrug one's shoulders and switch off.

"The democratising possibilities of the internet are in the process of speeding the degeneration of the public sphere into a proliferation of insular nodes, each fighting a war that can never be won. Battles cannot be won on the net nor can they be lost. What remains is a solipsistic politics of ME, ME, ME: my views, my truths, my facts, my pain, my anger. Convincing others and changing the world is forgotten in favour of the perpetuation of one's own perspective.

"It would be a mistake to look back at politics before the internet age as a prelapsarian idyll. But new realities create new problems as well as solving old ones. What is needed is a political model that can beging to redress the rise of solipsistic micropolitics; one that emphasises connection, self-critique and cool, considered analysis. What is needed is a different kind of technology that retains the internet's openness to participation but without the tendency to push activists and driven individuals towards self-righteous isolation. What is needed are tools for dialogue rather than tools for the proliferation of disconnected voices (see “How to talk about things we know nothing about”, 21 February 2008). The message-board and the comment-thread rarely encourage users to listen to each other, to share deeper (which usually means more complex) feelings rather than shouting at each other. To be sure, the possibilities for dialogue are there in the technology but the temptations of monologue usually prove too tempting."

etc.



(ME agenda is one of my old sites and I took issue with him over his views. Ironically, he did himself get involved in an impenetrable to outsiders issue that he wrote about at length online, on his own platform, which if memory serves related to the academic institution he was working for and which might also have been viewed as "micropolitics" to outsiders.

In the end I gave up on him.)

 

Keith has published a few pieces including the following (that was notably tweeted by Sharpe)
https://www.theguardian.com/news/2018/aug/03/denialism-what-drives-people-to-reject-the-truth

https://staging.me-pedia.org/wiki/Keith_Kahn-Harris

He wrote a piece that is not dissimilar to this latest piece in 2008:
https://www.theguardian.com/lifeandstyle/2008/may/06/healthandwellbeing.health2

The fact that Keith still seems satisfied in his life to me suggests the importance of human needs - people can still have disabilities but if most human needs are met, ones life can be satisfactory. The problem is for people who cannot work, do not have the energy for relationships etc - which means their human needs are not met and they are unlikely to be satisfied with their life.

 

Code:

https://medium.com/the-impossible-books-of-keith-kahn-harris/give-up-hope-and-take-up-smoking-living-well-with-a-chronic-condition-7fdb7989f668

Keith Kahn-Harris
Mar 9, 2015

Give Up Hope and Take Up Smoking: Living Well With a Chronic Condition

This is ‘book’ 2 in the series The Impossible Books of Keith Kahn-Harris. The cover was created by Gus Condeixa. For more on this series, read the introduction here.

What sort of book is it?

An unusual take on the self-help book. Relatively brief — 20–30,000 words probably.

How likely is it that I will write the book?

I go through phases of being desperate to write this book and other phases where I think it’s a terribly bad idea. There is every chance that the book would simply enmesh me in a nightmare of controversy from sufferers with chronic conditions without actually helping anyone much. Still, the book deals with something that’s very important to me.

(...)

Give Up Hope and Take Up Smoking will be organized into a number of chapters, including:

- Give up hope

- Love your illness

- Treat your doctor with suspicion and exploit him/her mercilessly

- Ignore the latest research

- Use and confuse your family and loved ones

- Start smoking

- Overdo it

- Relish idleness

-Wallow in misery like a bohemian artist or some such bullshit

-Die young and leave behind a decrepit corpse

Thanks for reading. If you enjoyed this Impossible Book, why not browse through the rest of the series here?
Also, please recommend and share it on Medium or elsewhere. I would love to read your comments too.
Many thanks!

 

Keith Kahn-Harris writes for a living.

Edit. He doesn't have to write unhelpful or stigmatising things about ME/ME advocates to make a living, he could just write about other things.

 

With those who write for a living one can never be sure of the extent to which their writings reflect their beliefs.

Incidentally, is cessation of expectation the same as giving up hope?

 

I think this is a good piece that uses mildly provocative language about giving up hope to first attract some attention, and then in the end, really say that patients need support and treatments.

 

Were you treated with antivirals? I don't know what viral infection I had, wasn't tested at the time that I'm aware of, but it was a viral thyroiditis (extremely elevated anti-thyroid antibodies) and I often wonder if I was treated for it early on if it might have prevented the onset of M.E. I felt 95% 'recovered' and returned to work only to relapse less than a month later.

I did the whole rest/pace thing for 9 months after the initial onset but that didn't prevent M.E for sure. How long would we need to rest? My thoughts are that we can rest for 10-20 years and it wouldn't prevent M.E.

 

No I have not had antivirals.

I have at times wondered if I should try them even now. There seems to be research the indicates they help a portion of people with established ME, but I have never chased up the research to decide if it is worth trying.