A disease funding comparison: is ME/CFS getting too little?

Evelien and I recently made an overview of clinical trials for ME/CFS that are in the pipeline. Although there are some reasons to be hopeful that things will improve in the future, currently there are few decent clinical trials planned or registered for ME/CFS. You can read our overview of ME/CFS trials here.

As our next step, we wanted to make a comparison with other illnesses. We would like to know if the state of ME/CFS research is the norm or whether things are moving much faster in other fields of medicine. After a brief search, we think the answer to the second question is simply: ‘yes’. In comparison with other illnesses, ME/CFS research is moving at a glacial pace.

Our method: American sources

We looked at various illnesses with a comparable prevalence and disability as ME/CFS such as multiple sclerosis, Parkinson’s disease, lupus, schizophrenia, Crohn’s disease, and rheumatoid arthritis. We collected data on NIH research funding and the number of intervention trials listed on Clinicaltrial.gov, both for the year 2019.

The NIH refers to the National Institutes of Health in the United States, one of the largest funders of medical research worldwide. Clinicaltrial.gov is the largest registry of clinical trials. We hope that these two American sources provide insight into the current state of medical research on ME/CFS and on each of our chosen comparator diseases.

Things could move 10-20 times faster for ME/CFS

 The results of our search are shown in the graph below. 

DiseasePrevalence estimates in the United StatesNumber of interventional studies listed on clinicaltrial.gov with starting date in 2019NIH research funding in 2019 (million dollars)
Parkinson’s disease0.57%202224
Schizophrenia0.25-0.64%155263
Multiple Sclerosis0.30%154111
Rheumatoid Arthritis0.41-0.56%7994
Crohn’s disease0.24%6376
Systemic Lupus Erythematosus0.02-0.15%38121
ME/CFS0.42%915

NIH funding is 5 to 17 times higher for each of the other diseases compared to ME/CFS. While the NIH registered an expenditure of 15 million dollars for ME/CFS in 2019, the amount for Parkinson’s disease and Schizophrenia exceeded 200 million dollars. The number of trials listed for these other diseases was 4 to 22 times higher than for ME/CFS. We could only find 9 registered trials for ME/CFS in 2019, while there were more than 150 for multiple sclerosis and schizophrenia.

For these last two comparator diseases, we looked at other years in the Clinicaltrial.gov registry, to check if 2019 was unusual. Unfortunately, it was not. The number of interventional studies registered for ME/CFS was substantially lower than for multiple sclerosis for each of the last 20 years. The differences are smaller at the beginning of the century because Clinicaltrials.gov only became available online in February 2000. Since then, 88 trials have been registered for ME/CFS compared to 1606 for multiple sclerosis and 2635 for schizophrenia. Put another way: the total number of interventional trials for ME/CFS since 2000, the start of the Clinicaltrials.gov database, is substantially lower than the number of trials registered for a comparable illness in a single year.

Number of interventional studies listed on Clinicaltrial.gov with starting date in 2019:

YearME/CFSMultiple sclerosisSchizophrenia
202011121134
20199154155
20184129145
20173116135
20168104141
20153114129
20146120166
201310112136
2012587146
2011381147
2010887132
2009667124
2008357178
2007651140
2006157137
2005141134
2004033137
200303693
200212251
200101745
20000030
Total8816062635

Being a psychiatric disease doesn’t necessarily hamper research funding

It is sometimes claimed that ME/CFS is receiving so little research funding because people think it’s a psychiatric, not a biomedical illness. The results for schizophrenia cast doubt on that hypothesis. Despite being a case example of psychiatric illness, it’s getting 17 times the amount of NIH funding and it has 17 times more clinical trials registered.

We also had a closer look at the type of clinical trials registered in 2019. We searched for ME/CFS, multiple sclerosis (an illness with a known biomedical pathology), and schizophrenia (a psychiatric illness). Evelien and I grouped interventions into the following categories: ‘Behavioral’, ‘Diet/Supplements’, ‘Drugs’, ‘Other interventions’ (e.g. transcranial magnetic stimulation or fecal microbiota transplant), and ‘Not relevant’ (such as trials on improving diagnostics or healthcare settings – in this blog series we’re mostly interested in treatment trials).

The results were rather surprising. You might think that schizophrenia gets more behavioral intervention studies and that multiple sclerosis has more drug and other intervention studies. The data doesn’t show this. There was even a trend in the opposite direction: percent wise there were more drug trials and fewer behavioral interventions for schizophrenia than for multiple sclerosis.

Interventional studies listed on clinicaltrials.gov with starting date in 2019:

 Chronic Fatigue SyndromeMultiple SclerosisSchizophrenia
Behavioral3 (33.3%)64 (41,8%)50 (32.5%)
Diet/Supplements3 (33.3%)3 (2.0%)5 (3.2%)
Drug0 (0%)45 (28.8%)50 (32.5%)
Other intervention1 (11.1%)21 (13.7%)27 (17.5%)
Not relevant2 (22.2%)21 (13.7%)22 (14.3%)

Behavioral intervention trials are popular for other illnesses as well

Another notable conclusion is that for all three illnesses behavioral interventions were extremely popular and comprised a third or more of all registered trials. For multiple sclerosis, there were trials on video gaming, art, Pilates, and ballet. One intervention trialed was called “Sit Less or Exercise More”. For Schizophrenia there were trials on ‘equine-assisted therapy’, walking for health, virtual reality therapy, computer gaming, and ‘Nurse Facilitated Face Care’ (facial care to improve the patient’s body image and self-esteem).

We doubt if this is the best approach to combat disease. Although these interventions may be valuable on their own, few illnesses have been cured with pilates, facial care, or ballet. If you were to ask a random person for the best strategy to make new treatments available, they would probably say that most trials should focus on drugs and other interventions because these have historically had most successes in medicine.

This begs the question of whether there are enough checks and balances on researchers when they determine which interventions should be studied. Perhaps they are merely studying what they find interesting, rather than what has the biggest chance of helping millions of patients.

Conclusion

Back to our original question. Based on NIH funding and registered trials on Clinicaltrials.gov, things do seem to be moving much faster for other diseases such as multiple sclerosis and schizophrenia. It may be surprising but for Evelien and me, this was a cause for optimism. It means that things can move much quicker for ME/CFS as well. It also means that patients are right to ask for more funding to speed up the search for effective treatments.

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