Reflections on advocacy

[Hoopoe]

I think ME/CFS advocacy is beginning to bear fruit and is growing all over the world which is exciting. The results so far are underwhelming. We should not be content with what we have achieved but aim much higher. The poor results are in part I think because research and societal change take time, in part because we're collectively still pretty bad at this advocacy thing, and of course sick and not able to function well in general.

We're in our own unique situation and will need to find our own unique solutions to it. We're trying to solve a complex problem that is not easily explained to others. We need to I think find a simple message that is true, gets to the root of the problem and shows a way forward.

Importantly we need to bring the topic of ME/CFS to institutions, politicians, scientists, doctors, journalists. It may seem intimidating, and does to me. There is a lot of emotional pain related to being sick and being disbelieved, and we risk disbelief and mockery every time we bring the topic of ME/CFS to someone in position of some influence. What I have seen so far has convinced me however that this is a vital part of making progress. We need to become more visible and less isolated and change the existing systems so that they can address our needs. The adaptation will probably be a two way thing.

The continued internal divisions in the community are a problem. They are really all about science I think (or in other words, what we know to be likely true, likely false, or don't know). I think they can be settled with more respectful dialogue, as well as intentionally pushing for certain popular theories to be tested in a credible manner (because that is how you deal with controversy in science).

 

[Hoopoe]

Finding a biomarker would be helpful and beneficial for general credibility and attractiveness of the illness to researchers and the pharmaceutical industry, as well as probably unlocking higher funding. But maybe we don't need a biomarker to gain the credibility that we need. If you think about it, the alternative views, which say that this is some form of internet mass hysteria or the CBT/GET model, are laughable. It simply makes sense to view this is a real and serious illness.

The alternative views are laughable only if you're familiar with them and also have some knowledge about the illness. I don't think we should shy away from questioning the psychogenic theories, and on the contrary, be aggressive and force its proponents to stop hiding behind vagueness, defend them and actually explain what they really mean. In doing so, they will only make it clear to everyone that their ideas lack substance.

I don't think it's a good idea to avoid this controversy because it creates the impression that we are maybe trying to conceal an uncomfortable truth. That plays right into the popular narrative of "patients being in denial" about their psych problems. In reality it is the BPS camp that is in denial about the fact their ideas are just bad and rejected accordingly.

So maybe one way to do effective advocacy is to have the goal of equipping politicians etc with the knowledge they need to be able to recognize these psychogenic ideas as the nonsense they are. They will then also understand how this catastrophic situation could come to be in the first place.

 

[Snowdrop]

In terms of advocacy I'd like for there to be much more robust data just for the symptomatic relief of symptoms. So many of us as we come to being ill try to invent our own cure (firstly) and then symptomatic relief. It takes up so much time, energy and resources that could be better channeled into focussed efforts at promoting big change that has a bigger impact on our health.

Maybe this is a big ask and the drugs presently available not sufficient to the task. I know it takes a while for the newly ill to take on board that unproven treatments are almost always time, money & energy down the drain but the information being widely available might facilitate a faster learning curve.

So many people are ill, many too ill to do much. I think one of the big hold-ups with getting people interested in learning more about ME is that few believe that it will ever affect them. Changing that perception would do a lot I think.

 

[Wilhelmina Jenkins]

Interestingly, there was a point here in the US right after the Incline Village outbreak when there was a concern in the general population that this disease could affect anyone. Advocates were on every talk show in the US. People were terrified that this disease would be another AIDS. When they didn’t see massive numbers of people dying the way that they did in the AIDS crisis, they lost interest.

I’m not sure how to get people more excited about the possibility of coming down with this disease. I do think that more accurate statistics about morbidity and mortality would help. I fear that we lose credibility when we say things like “Millions of people are dying “. And unfortunately, as heartbreaking as suicides are, they don’t raise alarm among the general public.

 

[Hoopoe]

I'm sure you could terrify parents if you told them their children could get this in high school and drop out and become disabled for the rest of their lives.

Pointing to some other measures of disease impact than mortality would maybe be better because in terms of mortality it does not stand out much as far as I know.

I think Ron Davis is going with a prevalence rate of 1% because then it's seen as much bigger problem than the 0.1% prevalence that you get with narrow definitions.

 

[JES]

Maybe this is a big ask and the drugs presently available not sufficient to the task. I know it takes a while for the newly ill to take on board that unproven treatments are almost always time, money & energy down the drain but the information being widely available might facilitate a faster learning curve.

I'm pretty sure there are already drugs that are up to the task, which is the annoying part to me. Ron Davis is looking for a cure and even he has resorted to studying existing drugs on the market (or at least already developed ones), since new drug development takes decades. So if there are potentially curable drugs on the market, there are virtually certainly drugs that can help with symptoms such as fatigue, OI and pain. Many of these drugs are commonly prescribed in geriatrics and for various psychiatric conditions. My experience is they are almost never prescribed to ME/CFS patients in standard care, so ME/CFS patients have to resort to queueing, sometimes for years, to see one of the ME/CFS "specialist" doctors, some of who are let's say not very orthodox.

 

[Wilhelmina Jenkins]

As someone who had a child who became very sick with this disease in high school, I have to say that I never met a parent of one of her friends who was seriously fearful that it could happen to their child as well.

Do we have any idea where Dr Davis obtained that prevalence rate?

 

[Denise]

As someone who had a child who became very sick with this disease in high school, I have to say that I never met a parent of one of her friends who was seriously fearful that it could happen to their child as well.

I too have never met anyone who was afraid their child might develop ME. Not parents, not people in social settings..... no one seems afraid of getting it despite descriptions of how disabled patients can be.

I would very much like to know how he came to that rate and how he is comfortable with it. (We need solid prevalence studies! We also need natural history studies, etc....)

 

[Snowdrop]

I'm sure you could terrify parents if you told them their children could get this in high school and drop out and become disabled for the rest of their lives.

Similar point to Wilhelmina. You can tell people things. They may even be true but the person hearing must first believe that it is in fact true. So far I think nobody much takes it seriously. When my kids were in school I expect I would have got a similar response from most parents I knew. They had other bigger concerns with their children that loomed larger.

What could change that is a conversation about possibilities. This could be a little fraught and perhaps some will see it as going to far but discussing the possibilities around how one can succumb to ME might start to get people thinking. A combination of genetic vulnerability, environmental factors (here I mean toxins) and a bout of an of a number of ordinary infections and this could be you. Genetic vulnerability gets attention and the other two are everywhere and easy to understand.

Then providing a deeper look at the impact on lives after that might eventually get through.

 

[Snowdrop]

I'm pretty sure there are already drugs that are up to the task, which is the annoying part to me. Ron Davis is looking for a cure and even he has resorted to studying existing drugs on the market (or at least already developed ones), since new drug development takes decades. So if there are potentially curable drugs on the market, there are virtually certainly drugs that can help with symptoms such as fatigue, OI and pain. Many of these drugs are commonly prescribed in geriatrics and for various psychiatric conditions. My experience is they are almost never prescribed to ME/CFS patients in standard care, so ME/CFS patients have to resort to queueing, sometimes for years, to see one of the ME/CFS "specialist" doctors, some of who are let's say not very orthodox.

There may be but there will be no access to the for many unless there is data to support their use. If there were better management strategies in place then many could benefit from better QoL and perhaps be more able to engage in the much needed advocacy. Perhaps getting drug manufacturers interested in profiting is a possibility? IDK

 

[Jonathan Edwards]

We tend to talk about flat prevalence rates but sometimes I think they are misleading. A prevalence rate is the number of people per hundred, or per hundred thousand, who have the illness now. It seems that 0.2% is a sensible figure for clinical ME. But if adolescents have ME for ten years on average and they make up a third of all people who get ME then the number of people who have ME at some time during adolescence will be more than 0.2 %. It might be 0.5% or conceivably more. I doubt as much as 1%.

 

[Wilhelmina Jenkins]

We tend to talk about flat prevalence rates but sometimes I think they are misleading. A prevalence rate is the number of people per hundred, or per hundred thousand, who have the illness now. It seems that 0.2% is a sensible figure for clinical ME. But if adolescents have ME for ten years on average and they make up a third of all people who get ME then the number of people who have ME at some time during adolescence will be more than 0.2 %. It might be 0.5% or conceivably more. I doubt as much as 1%.

My question always is how well do we know any of these numbers to be factual. You folks in GB may have a better guess, but no one tracks this disease in the US. We’re mostly guessing based on a few community-based studies done years ago.

 

[Jonathan Edwards]

My question always is how well do we know any of these numbers to be factual. You folks in GB may have a better guess, but no one tracks this disease in the US. We’re mostly guessing based on a few community-based studies done years ago.

I suspect the figure for 0.2% for ME as defined by something like CCC is pretty robust. A similar figure has come up in studies in the UK, US and Norway at least as far as I know. Moreover, it cannot really be very different from that. Over the years I have totted up how many people have various illnesses amongst social contacts and relations. Lupus and MS come in at about 1% of the population, rheumatoid at about 0.5% and psoriasis well above 1%. The number of people I know socially with ME is between lupus and RA. That might be biased but if ME was more common than RA I think I would have registered that. Similarly if it was rarer than lupus.

I think if we are talking about people who are significantly disabled it must be somewhere around 0.2%. Moreover, I am not sure thee is any great point in trying to be more precise. Numbers of that sort do not affect arguments about what needs to be done.

 

[Wilhelmina Jenkins]

I agree that prevalence figures don’t change the work that needs to be done, but they may affect the willingness of the responsible health agencies to put appropriate resources behind that work. In advocacy work, we use these numbers all the time to convince those in charge of funding that we are facing a serious health crisis. I get uncomfortable making a case with dubious statistics.

 

[DigitalDrifter]

It seems that 0.2% is a sensible figure for clinical ME.

The population of the UK is 66,440,000. 0.2% = 132,880. I doubt that many people have real ME, chronic fatigue may be but not ME. I suspect doctors are handing out the diagnoses based on loose criteria.

 

[Saz94]

As someone who had a child who became very sick with this disease in high school, I have to say that I never met a parent of one of her friends who was seriously fearful that it could happen to their child as well.

Do we have any idea where Dr Davis obtained that prevalence rate?

Why did the parents not believe that their child could get it too?

 

[Wilhelmina Jenkins]

Think about a child with MS in your child’s classroom. You wouldn’t worry about your child having MS also. You would just hope for the best for the sick child and keeping moving along.

 

[Jonathan Edwards]

The population of the UK is 66,440,000. 0.2% = 132,880. I doubt that many people have real ME, chronic fatigue may be but not ME. I suspect doctors are handing out the diagnoses based on loose criteria.

The figure is based on application of criteria by people with a special research interest. And among the people I know more than one in a thousand have ME with significant disability.

I get uncomfortable making a case with dubious statistics.

I don't think thee is anything dubious about the figures though. I see them as generally agreed. If it were a matter of budgeting for very specific services like kidney dialysis one might want to be more precise but it isn't. I don't think willingness of agencies to fund will have much to do with numbers within an order of magnitude.

 

[Hoopoe]

Why do you think that people in relevant positions, where they could do something, aren't generally doing anything?

 

[Jonathan Edwards]

Why do you think that people in relevant positions, where they could do something, aren't generally doing anything?

On the clinical service front as far as I can see all there is to offer is supportive care and supportive care is being cut back all around for political reasons. Support is being taken away from everyone, not just PWME.

On the research side the key problem is that there are no leads to attract productive research teams. It is difficult to persuade someone to start a search with no clues.