Dear forum, I wanted to write to you. These are my personal views on the situation we all find ourselves in. It’s not an official statement.
In my couple of years living with this condition I have had many ups and downs. I know that for many people, there have been either precious few or no ups. I count myself as one of the fortunate ones in a cohort of exceptionally unfortunate people who did not deserve any of the things that have happened as a result of taking medications and supplements that are approved as safe.
Early on, I was helped immensely by the admins here, both of whom who have been living with this condition longer than I and with worse symptoms. Their kind, helpful replies to my requests made all the difference to me. It is entirely possible that they saved my life, and for that I am extremely grateful to them. Other people who I had messaged here also helped a lot, particularly Scotsman who I think had we met under other circumstances could have been a great friend. As is, he’s a great friend who I mainly email, rather than socialise in person with. There are others too, early on I met with UKguy82, which despite my fears about how vulnerable I would be meeting a stranger from the internet, it turned out to be a very helpful meeting, and an enjoyable one too.
The moderators here don’t get credit for how hard a job moderating a place like this is. When I signed up, I remember frantically looking for something that could help and found great comfort in certain posts, but as I read on, I realised that, cruelly, some people look to exploit and troll communities like ours. There are many people who will happily tell you what you want to hear about how recovery is achievable if you buy the products they are happy to sell you. History suggests that the membership of a site like this wish to believe (I did) and in the event of the products not working, will happily give undue attention to these claims, and will invest ever further, both financially as well as emotionally. They will tie themselves into knots to agree with a statement which doesn’t condemn them, and I can understand that. There are also recommendations which are made in good faith, but history suggests are hazardous. We are aware of suicides as a result of people worsening their condition following taking advice from people on internet forums. It’s quite a task to feel that you are trying to hold back people who wish to exploit your friends and community, at a cost of their lives, potentially. Also, the community itself is often clueless (in the true sense of the word, not a pejorative) about the potential outcomes of recommending and taking substances that previous to their visiting this forum, they had never even heard the name of, let alone know how it may affect us. Taking advice from someone who only appears to know more than you is not ideal.
Early on, I was surprised at how many scientific articles got posted. I myself am much more science literate than most people I meet and yet I have read approximately zero scientific journals. I’ve seen pop science tv shows, heard podcasts by scientists, but these articles are something else. I quickly realised that I would be dramatically out of my depth if I tried to engage with the science of this. I think this is understated very often here. People assume that a plausible theory can be stumbled upon, but I think we should get real on that. On the subject of those who are certain the answer can be stumbled upon, or just thought through in essentially layman’s terms, I will say that at one point during my membership here I saw what I thought was an extremely knowledgeable person make a series of arguments supporting his theory. The problem is that all of his arguments were built on a fundamentally incorrect statement. It all seemed quite reasonable to me, until it was explained. At that point, I knew that random people posting on a forum with no previous experience of cutting edge science were not going to read a few journal articles and come up with a solution. Be careful who you put your faith in.
I’ve written about this next part recently already. Before joining here, I had no clue about how “science” works. The image I had is probably fairly similar to what many imagine, a scientist tirelessly trying to work out why cancer happens, or how to stop HIV progressing …or pick another worthy cause. They work with passion and a drive to make the world a better place. I think that scientists likely do wish to improve the world, and that if they could, would. The reality is that those things cost cold hard cash. Unimaginable amounts. Far more than we could fundraise here amongst our membership. I have read many times that we need experiments and research happening now. I agree. However, all research is not equal. If I go to 3 scientists, explain what we think the problem is, and would they like to accept our money to research, it’s quite possible that all 3 scientists will take different approaches. If I’m expected to choose one course of action, how do I know which to choose? I don’t have the qualifications or experience. If we spend the community’s money and it turns out that what happens is no good, then I’ve messed up. Money, time, hope gone. That’s why I don’t think the community needs to concern itself with science. If it’s not your field, don’t try and make it your field - unless you’re starting a degree and planning a masters in an especially relatable field. In which case, see you in five years.
Which brings me to fundraising itself. The community is often quite outspoken in how much it donates to the foundation to fund research. The reality is that at current levels, the forum contributes a low single figure percentage of the foundation’s funding. This is because the amount is very small, not because the foundation is a well funded organisation. The word foundation conjurs up big buildings, huge sums of money and many staff. This is not accurate. Having the foundation on our side is great and I appreciate their efforts, but I think the community expects more than is possible from it.
In my opinion, the community needs to work out what it thinks the future should be. The options I suggest are to actually further our cause or to continue as we are, repeating the same loop and arguments forever. Every single time someone posts “this might help” and links to a health food shop, we get further away from reality. Guessing that something might help and suggesting that it’s worth a try is worse than saying nothing. I am quite comfortable saying that anything for sale in a health food shop today will not cure you of this condition. If it could, the past decade of experimentation and posts by thousands of people here would have seen some sort of emerging trend, and we’d have more replicable successes. There is no trend, that’s why I can say these things do not work.
A number of people say that being negative is not helpful. Being unduly positive or optimistic about things which do not work is worse. As long as we perpetuate the idea that you can fix yourself through self experimentation (normally using substances that have repeatedly failed with others) we postpone actually dealing with this problem.
So how to do that? Firstly, nobody’s coming to save you. I’ve already explained that the foundation is ill equipped to do this. Secondly, I’ve explained why you can’t do the science. You don’t know what you’re doing. Thirdly, you will not stumble across a magic combination of health food products. So forget all of that. Leave the things that you can’t do to people who can.
I’ll leave you to think about what a person with no scientific skills can do to help a scientific problem which has zero media presence and is underfunded. If your answer is “someone should…” then you have failed.
I implore you to think seriously about this. Nobody is coming to save you and you cannot directly save yourself. If people could get onboard with that, the future will likely be much brighter than it currently is.