Why is ME/CFS so neglected?

Some of the commonly proposed explanations for the current lack of funding (of everything):

1. Misogynism, because ME/CFS affects more women than men.
   
2. Wessely and others said it's deconditioning and (basically) hypochondria and that's why people don't see a need to do biomedical research into this condition.
3. Health authorities don't want to admit (or fear) it's an infectious disease that they can't manage or mismanaged in the past.
   
4. It's seen as too hard a scientific problem.
   
5. The perception that ME/CFS doesn't define anything in particular, caused by flawed and unspecific illness definitions.
6. Governments or powerful corporations don't want patients to receive disability benefits / or the private equivalent because there are too many of us and we get sick at young age.
7. Ignorance about the illness, and the misconception that it just means being tired a lot of the time.
8. Patients face many obstacles to advocacy, like being sick, the illness being underdiagnosed, poverty, not being able to think straight when spending more than a short time on one's feet, previous traumatic encounters with doctors etc.
9. The BPS people have spread the word that anyone researching ME will be attacked by hostile patients.
10. It's stuck in a vicious cycle of low funding that perpetuates low funding.
11. There is no medical speciality that has taken responsibility for it (other than maybe psychiatry).
12. Infighting over various aspects, resulting in a divided community and many patient organizations that each do their own thing.
13. General lack of public relation skills as well as lack of a professionally managed media strategy.

It seems like a reasonable assumption that effective advocacy would involve trying to find out which of these are most important and trying to address or work around them. But maybe we don't need a customized advocacy strategy and can make good progress just by doing the things other patient groups do.

 

I would add something like:

ME/CFS isn't being funded because many researchers think it's not an illness but a collection of disorders that have little in common except vague symptoms such as fatigue and a lack of a pathological explanation.

So, in this case, it's not so much a problem of correct illness definitions or adequate case definitions, as whether there is something that is sensible to be studied.

 

Presentation of data, disease burden, and funding comparisons may be one way, but I'm not guaranteeing this is the best way.

It's taken decades in Canada to get any traction with advocacy.

Perhaps the numbers eventually had some effect. Maybe repeating the data and building on it, as well as getting some MPs on board helped.

However, the Canadian data, no matter how compelling, fell on deaf ears for decades.


This data has been posted before, but here are some examples of the effects of ME on Canadians: https://www.mefmaction.com/docs/CCHS_Stats_2014.pdf

See pages 7 and 8 for funding comparisons: https://www.mefmaction.com/images/stories/News/NetworkNews/NationalME-FMActionNetwork-Casey.pdf

Estimating disease burden: https://www.meaction.net/2017/01/07/dimmock-mirin-jason-estimating-disease-burden-in-the-us/

@ScottTriGuy may have some ideas. I understand the group who finally took this across the finish line in Canada, established good connections with decision makers.

ETA: the Health Canada biomedical research announcement this August did quote the number "580,000" with ME in Canada. That number seemed to be register with the decision makers.

(There is of course, much more work to do here.)

 

@Thrish I have added your suggestions. @Michiel Tack that is number 5 on the list.

 

I think there's a difference.

There'an argument that past definitions have focused too much on fatigue, that we don't have reliable diagnostic criteria to define the illness and that this creates uncertainty about diagnosis or heterogeneity in research samples, etc etc. So this is seen as a barrier that stalls progress and makes it harder the main pathology behind the syndrome. I thought that was the point you were making at number 5.

The thing that I meant is the idea that maybe there isn't and never will be a case definition that makes sense. That ME/CFS is not a couple of diseases to be discovered but a
myriad of (say 50 or more) illnesses, many very rare ones, others misdiagnoses or unusual presentations of well-know illnesses that have been overlooked. These conditions might have little in common pathologically and so it might not make much sense to spend a lot of money on research trying to find a biomarker or treatment for ME/CFS. That's the idea that I meant, which I think is distinct from number 5.

 

I understood the question in this thread as what is the best way for pwME to advocate for themselves. Many of the above are very true, but are reasons why ME is not recognized, not funded, is maligned, not covered in medical school etc. IMHO, if I was to present some of these to say MPs, I would go with #'s 5, 7, 8, 10, and 11.

ETA: the above problems are of course some of the reasons for advocating, however, pwME also need to present data. Data from other countries would hopefully help in countries where decision makers have blocked data collection.

 

I would add the myth that it usually “burns out” after a few years, meaning essentially no point doing anything as it will sort itself out in time.

ETA: I wonder if this started because that’s about how long it takes patients to give up trying to get some help and stop seeing doctors, or get to a more stable state and start reporting they feel a little better.

 

ME/CFS is not funded because relative to the prevalence and burden, not much historically has been raised privately (this is a bit of a tautology).

Private funding is an important source of funding for research. For example, it seems to be at a similar level in total to funding from the Medical Research Council and National Institute of Health Research in the UK.

A relative lack of private funding means we have less private funding than we could (obviously) but this can also have knock-on effects to how many active researchers there are, particularly those with pilot data, who could apply for government-funded grants.

There are probably a number of reasons we don’t raise as much privately as we could, some of which could be amenable to initiatives:

(I) Lots of people with the illness not diagnosed.

(II) The financial impact of the illness on the discretionary expenditure of families affected.

(III) No charities doing ground-level fundraising for research (e.g. from the general public) in many countries and some charities who do exist not focusing that much on raising money privately.

(IV) Patients and their loved ones not seeing it as often a long-term condition which often is not amenable to readily available treatments so investing little if any of their own money and/or energy in donating or fundraising for research.

(V) Patients often having little spare energy to fundraise, making many types of fundraising difficult or impossible.

(VI) People rarely seeming to leave money in their wills for research. One possible reason in some cases might be some people think they’ll be cured before they die.

(VII) Patients and their loved ones thinking medical research is like health expenditure. Money for the latter very often comes from tax income and similarly people may think it’s primarily governments’ to ensure research breakthroughs happen quickly.

Etc.

 

The lack of private funding seems related to "infighting and divided community, every patient organization doing their own thing".

If you don't feel part of a community of people with the same health problem as you, then you will not donate to research (or only to research that you feel is relevant to your particular subgroup)

 

In an effort to boost good research results for the little that gets funded I'd start by educating researchers.

It seems (bizarrely) that they still do not know how to select for a robust cohort that represent more than moderately fatigued.

Helping researchers to stop doing all the things we are critiquing as bungled opportunities to find something useful would IMO help kick start a better environment overall in which to move forward.

NO more money on how depressed, stressed and anxious we are etc. I'd make this a rallying cry. (I find seeing a shiny new study on this topic most depressing). No more accepting without loud and decisive comment that cancer gets phychotheraputic research for example. Cancer has treatments and the search continues within a large researcher base and funding. Not just endless rounds of grad student papers that say the same thing (for the most part poorly) over and over.

If I could I'd create some consensus templates that can be cribbed from and used for commenting to refute common misinformation.

 

All the elements previously mentioned are factors in why ME funding sucks, for sure.

What I learned working with our group is that relationship building with key people who can make the desired changes happen is absolutely necessary. Both within the community and with the government.

We can have all the data in the world, but if that is not paired with building key relationships, then it only goes so far, and that ain't far. It's not what you know, it's who you know.

Identify the people who have the power (be it skills, position, wisdom, connections) to make change happen, and endear yourself to them. Easy-peasy, right?

Identifying key people in government is easy enough. But it is hard to build that relationship when others (diseases/health) are also competing to charm them. It is harder still to have that relationship have a tangible impact on our communities' priorities / needs.

Identifying key people in the community is harder. Not so much the hard skills, but the ability to work on a team. People are messy. Egos and shit get in the way. So managing those relationships and building a team bond among those who have the ability to work collaboratively and prioritize the community over their ego is crucial.

The person who knows the history and data and science may not be the person that builds that key relationship with someone in the health department. That person will need very strong interpersonal skills and nuanced knowledge of how government works.

Essentially I think it's 'simply' the right people with the right skills in the right roles. And people like working with people they like. That applies to the community and to government.


(ETA: correct typo from 'preciously' to 'previously')

 

I think the biggest ones from that list are 2 5 6 7 8 9 10 11.

 

I've got nothing to add to the discussion but just wanted to highlight that, to me, the thread title doesn't describe the valuable conversation taking place. Going by the title I was expecting a discussion on how best an individual might deal with social services, or the HR department at work, or their friends and family.

ETA: In a post below it's confirmed that the thread title has now been amended, so this post doesn't quite make as much sense as it did - still I'll leave it here.

 

Thank you @ScottTriGuy for your comments.

 

All agreed @Andy and i feel that the first post of the thread mentioned more of the barriers rather than how to advocate for our disease.

Personal advocacy pertains to getting appropriate care and social services in your personal context with what you personally need.

Advocacy for our disease and our patient population would pertain more to having access to funding research, researchers, competent physicians, effective treatments, epidemiology studies to understand the population, and so on.

While there may be an overlap between personal advocacy and disease advocacy, the end result on advocating for our disease is that everyone benefits.

There are many areas that need to be advocated on, and a multi-pronged approach is necessary. There are many talents out there, from some having expertise in fundraising, in politics, in research, in education. When we establish goals and teams to work together, we join forces and we have better chances of success. Not easy when we face so many physical and cognitive barriers. But we have had success in building a forum. Several teams have made movies. There has been the millions missing movement.

We may not agree on everything, but that’s ok. If we have a common goal, the efforts of everyone compound and have better chances of success.

 

I changed the title. I originally wanted to examine how to best advocate (after making a list of reasons why we haven't been successfu yet) but then I got tired and distracted. It's also unclear how we can find out what the best way is other than just trying to see what works.

 

I think a lot of it comes down to the nature of the scientific problem.

The 'usual' investigative techniques came up empty. Governments and other funding sources aren't going to - and shouldn't - heavily invest without serviceable leads. Capable researchers are typically going to choose fields where tangible progress is happening.

That's not to say that any of the other reasons listed aren't important. But at the bottom of it all is that we just don't have enough purchase on the problem to drive heavy investment and attract a lot of investigators.

 

as seen recently with a couple of new research studies, this is perpetuated due to the huge amount of flawed 'research' that is out there that is repeatedly regurgitated, and several individuals who continue to highlight it to all and sundry at every available opportunity.

Like the recent re-examination of Hans Eynsencks 'work' a thorough going thro of all of SW,MS,TC and others research in relation to ME and CFS highlighting the faulty scientific methodology, possibly expanding to their subsequent research on other illnesses/diseases/disorders might go somewhere towards exposing the unsound basis for their theories.

 

I think it´s not tied down to an infectious disease.

Even if it is (in its perpetuation) not an infectious disease they might feel unpleasant to admit that they don´t have any clue. The situation is even more uncertain.

Probabaly the main approach should be to begin at, so to say, zero knowledge. This might be uncomfortable, especially as there aren´t any specialists (instead we have researchers in metabolism, in microbiome, in immunity asf. (all with findings that may show - only - some tendencies).

The main questions may be:

• Why can PEM/PEF or PENE occur delayed?
• Why this wide range of possible symptoms, non of which is specific?
• Why is there a feeling of unrest, rather an exhaustion than a fatique/tiredness? (Already here the examination has gone wrong since long.)
• Why the possible up and downs in the course of the illness (and only in a tendency a worsening)?

Probabaly nobody wants to deal with such a logic when they come into the field of ME with expectations from their special area.
I think the question must be: Which structure could account for these properties? (A question into the blue.)