Prognosis of ME/CFS – by David S. Bell, MD

That reminds me of a joke about psycho analysis. If you start it with the problem "During night, I pee into my bed - I want it to stop", you will come out saying "I still pee into my bed, but now I feel comfortable with it".

 

I understand your call to protest/advocate/make things happen @MErmaid . I think it's worth having a dedicated thread - do we have one? We need to discuss what limits our efforts and figure out how we can work around those limitations where possible.

There is another angle on this from the point of view of UK residents. If you are in receipt of benefits, and probably if you are covered by an insurance policy, your social media pages are likely to come under some scrutiny.

So, even if you decide it's worth occasionally spending all your spoons on a little advocacy and it shows up on your social media, it could be used against you later. Now, if we had a biomarker or some lab test to prove our condition, then we could still prove that we are ill. But all most of us have is our own word for it and our descriptions of how it affects us.

Without the luxury of a biomarker, we are doubly damned. If you are on benefits you have to be careful not to risk them in order to survive. The fewer people who are active in advocacy, the longer it is likely to take to get research to the stage where we have a diagnostic biomarker.

 

I want to comment about Dr. Bell. His commitment to learning, understanding and helping those of us affected with ME has been outstanding in my view. This question, about what realistically is the long range prognosis is very important. A lot of people might not have wanted to “look there”, maybe preferring to stick with the common assumption that people can or will recover. Historically speaking, if an illness didn’t kill you, then there was a good chance you could recover from it.

We certainly want a cure to be found and probably expect it is possible, but until it is, what we have is an ongoing condition—in effect, an incurable condition. How are we ourselves going to view this and communicate to others about it—that is a challenge when both we and “the world” want us better.

I very much appreciated his and a few other of our long term “specialists” coming out with it that in their experience, patients don’t “recover”. Dr. Komaroff said this, maybe Dr. Cheney—we could come up with a list. This is not to say that these doctors “know” absolutely. The point is that non-recovery appears to be the norm.

Most people are socially oriented to the degree that we mostly want to be the way people want us to be, and to have our stories turn out the desired way, so that we might distort our recognition of our real experience to conform to what is generally accepted. Or we might harm ourselves by overdoing it, not getting sufficient support, etc. So those who can tell it like it is, including an “expert doctor”, lend us support in making better adjustments and lives.

 

Dr. Bell writes about symptoms I experienced as a teen that no one else writes about. Symptoms that before I read Dr. Bell, I had no idea were even related to this illness.

 

I thought I would highlight that this post caused me to lose a few hours sleep. I read it not long before I was planning to go to bed, but it took me 2 or 3 extra hours to try to get to sleep and when I slept, it was not as good a quality sleep as I normally get, and I woke up at around my normal time so got less sleep than usual.

It is really not nice to be told in front of your peers in an aggressive manner that what you wrote something akin to bringing faeces into their lives.

The post seems to claim that guilt trips should be avoided, but the post itself implicitly is a guilt trip on me.

People with ME are sensitive to stress, it can cause setbacks and relapses, just like physical and mental exertion, and I think posters should be sensitive to this.

My initial response was to defend myself and lash out in kind, but I restrained myself.

This forum is about science. There seems to be little doubt needs to be more research on the illness.
Discussing how we can bring about more research into the condition should be an acceptable topic for discussion.

There are 3 main sources of funding for research:

(i) pharmaceutical companies and the like. They have large budgets but it is hard to interest them at this time because the biology is not well understood, and there are not good targets for them to try to adjust so they are not investing much and at this time. This could change if we could develop the science.

(ii) government agencies. These are certainly an important source of funding. Though outside the US , the budgets are not massive when one considers the thousands of conditions there are and that research budgets also cover basic (non-illness specific) biological research and other non-illness specific research.
The best way to maximise such funding it seems to me is to have as many researchers as possible putting in grant applications. Researchers will often have difficulty obtaining such funding without pilot data, which will tend to need to be funded by the charitable sector

(iii) ME research funds. A lot of their money will be raised by people with ME and their loved ones, either fundraising and are donating. This is one area where we can definitely make a difference.
I think there is potential for a lot more to be raised. Somebody posted somewhere that the UK MS Society has raised nearly £300 million for research over the years. By comparison, UK ME/CFS charities have only raised a few million in total. Yet ME/CFS is something like twice as prevalent. And the UK is one of the best countries with regard to raising money. In many countries in the world, it looks like very little is raised for ME/CFS research. I don't buy the argument we are at the limit of what can be raised or even close to it.

So I think discussing how more money can be raised by the ME/CFS community is an important issue. It is one of the things we have most power to influence. If people wish to the disagree with what I say, feel free, but ideally I think it should be done in a less aggressive manner.

As I mentioned previously in another thread, if one feels the need to use swear words, it it may mean one should try to calm down before posting on an ME forum particularly in reply to someone whose points you disagree with (rather than random swearing).