What research do you want to see? (study ideas)

I would like to see more research on alcohol-induced symptoms & intolerance, both mechanistic and epidemiological; the latter to determine how common it is in well-characterised ME/CFS cohorts, the precise nature of the symptoms experienced and their time-course, and to determine whether those who report it also report intolerance to other medications that act on the central nervous system in differing ways.

Bansal (BMC Family Practice (2016) 17:81) suggested that this was an unusual symptom that "may be used to confirm the diagnosis", stating that from his clinical experience "nearly all patients. . . have reduced their intake of alcohol and I have not seen a single patient who had increased his/her alcohol intake".

There are very few conditions that result in unusual alcohol-induced symptoms or significant alcohol intolerance. There are many reports of alcohol-associated pain in Hodgkin's disease which seems to have been first described in 1950 (Amer J Roentgenol 64:613) followed by a number of case reports in the 1950s and 1960s; the first systematic investigation of it seems to have been in 1960 (Quart Journ Med XXIX:113). There was a suggestion in a letter to the Lancet in the 1970s that alcohol intolerance in Hodgkin's was not as commonly found as implied by the initial reports. Nonetheless, case reports of the same phenomenon continue; there was one in 2019 (BMJ Case Rep 2019;12:e228440) in which it was a presenting symptom.

Alcohol intolerance also occurs in the hypereosinophilic syndrome: in 1988 two cases where alcohol intolerance was a presenting feature were reported (Alcohol Clin Exp Res 12(1):147-8). There is also the well-known "alcohol flush" syndrome reported to result from a variant in ALDH2 causing deficiency of aldehyde dehydrogenase II. Alcohol intolerance can also be deliberately induced by medication as treatment for alcoholism: disulfiram (Antabuse) acts by inhibiting aldehyde dehydrogenase resulting in the accumulation of acetaldehyde from which a number of unpleasant symptoms flow. There was a broader discussion of alcohol intolerance syndromes in "Alcohol: intolerance syndromes, urticarial and anaphylactoid reactions" (Clin Dermatol 17(4):417-422). Flushing associated with alcohol has also been reported in carcinoid syndrome.

Alcohol intolerance in ME/CFS has only very rarely been studied. One of the few publications of significance is "Alcohol use in chronic fatigue syndrome" (J Psychosom Res 56(2004):203-206) where it was reported that in a study of 114 CFS patients 2/3rds self-reported a reduction in alcohol use and the most common reasons for this were exacerbations of physical symptoms.

In "Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" (Front Paediatr 7:2019) there is a small table showing the prevalence of alcohol intolerance in ME/CFS in various studies.

Interestingly there are also occasional references to it in the historical neurasthenia literature, some of which may have been cases of ME/CFS.
 
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Chris Ponting said:
rare DNA differences causing disease (found using whole genome sequencing), rather than the common ones investigated in DecodeME/GWAS
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I've seen a few people with ME/CFS on PhoenixRising and Reddit order online WGS tests. I wonder if it might be good to do a cheaper preliminary study where researchers put out a call for people who already have their results to send them in.
 
Many moons ago, long before this forum, there was discussion somewhere about the use of nicotinamide as a painkiller in ME/CFS.

I can't remember much detail, except that among those who tried it there was a clear dividing line: it either worked well or had no effect. I was so sceptical I nearly didn't do it, but then was taken aback by the effect—for the 'ME/CFS burn' it worked as well as the weak opioids I was prescribed.

I keep wondering now if that very unscientific but interesting experiment could have told us something about subgroups.

If @Caroline Struthers eventually manages to set up a multi-arm trial testing possible disease-modifying drugs, maybe it could be discussed a candidate—not as a treatment for ME/CFS, but as a potential symptom reliever. If it's shown in a real trial that it works for some and not others, it might even offer a clue about what might be going on with our muscles.
 
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re: alcohol intolerance

Talked about this before elsewhere on the forum, but probably worth repeating here.

Different alcoholic drinks do very different levels of 'damage', to humans in general, not just ME/CFS patients. At one end is stuff like cider, which is well known to deliver ferocious hangovers. At the other end is med-high quality spirits, particularly vodka and gin (which is just vodka with added flavour from plant material).

I did some reading on this back in the 2000s, and it turns out that distillation removes (or at least offers the opportunity to remove) most of the worst offenders produced in fermentation, like ethyl acetate, acetone, fusel oils, etc, which collectively are concentrated mainly in the first and last parts to come out of the still. The primary component of beverage alcohol is of course ethanol, which certainly does some damage on its own. But the other components are proportionally more damaging than ethanol.

Any study on the effects of beverage alcohol on ME/CFS patients not only needs to control for that, but it may actually offer some good clues as to where any metabolic problems or alterations lie.

The lack of interest and robust investigation of this long reported feature of ME/CFS is almost the poster child for the overall failure by medical science to do its due diligence and properly follow up on all reasonable clues about the condition. Particularly as it is also something that is amenable to fairly straight forward and robust investigation, including a good existing set of population baseline data for a compare and contrast.
 
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Sean said:
The lack of interest and robust investigation of this long reported feature of ME/CFS is almost the poster child for the overall failure by medical science to do its due diligence and properly follow up on all reasonable clues about the condition. Particularly as it is also something that is amenable to fairly straight forward and robust investigation, including a good existing set of population baseline data for a compare and contrast.
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It's especially interesting as alcohol consumption is generally associated with mental illness, depression and distress. Whether it's accurate or not is hard to tell, and I frankly wouldn't put much trust in the health care industry's ability to research this competently, which is really a missed opportunity.

So much has been made about the social measures during pandemic restrictions and it has been attributed mostly to that, to the hardship of being isolated and having disrupted routines. All signs of mental illness and distress, according to the experts on mental health. Most of which would agree this is basically what we have. But then they don't care that we instead barely drink any. The perks of falling at the 'interface' of medicine and medicine (i.e. psychiatry, which despite odd classifications is definitely a medical thing).

One of those "in a just world" thing. With a competent profession handling mental health care scientifically, this could be a useful lead worth researching. But instead I would assume that even with dozens of studies they'd just never even get around to doing it right, can't even figure out which questions to ask.
 
Chris Ponting said:
In no particular order here are a dozen: (i) rare DNA differences causing disease (found using whole genome sequencing), rather than the common ones investigated in DecodeME/GWAS, (ii) "stratifying" pwME based on more rigorous clinical investigation and/or clustering of electronic health record/questionnaire data, (iii) studies investigating ME/CFS's true prevalence & incidence rates (in the UK & beyond, and in seldom-included communities), (iv) studies of those who recover/improve, (v) the physiological triggers of & responses to crashes and what causes descent into the severe phenotype, (vi) clinical trials of existing drugs treating POTS/Orthostatic Intolerance, (vii) identifying the "factor(s) in the blood", (viii) large-scale case/control autoantibody study, (ix) an effective blood-based biomarker diagnostic panel, (x) studies focused on the female disease bias, and interaction with oestrus cycle and menopause, (xi) post-mortem studies seeking evidence of persistent viral infection, (xii) commonality/difference in disease pathogenesis compared with MS, Long Covid & chronic Lyme.
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I would like to see someone with access to NHS referral data (presumably at a Trust-wide level although perhaps it is available at a national level as well?) determine whether there are any seasonal (or other timing or event-driven) patterns in the referrals to NHS ME/CFS clinics.

Basis for this suggestion: in November 2024 there was a piece of typically dreadful psychosomatic research that nonetheless included an interesting statement suggesting such seasonality:
The TSC is referring to the seasonal pattern of referrals to ME/CFS services, rising in the winter and falling in the summer.
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However, this was to a paediatric clinic and so referral patterns may be influenced by school holidays and so forth; the obvious next step would be to check whether the same pattern holds across adult clinics.

If there are such patterns, I'd like to see further research to determine whether they relate to ME/CFS onset. I'd also like to see whether it is possible to correlate referral patterns to other events - e.g. is there often a surge of referrals a few months after a particularly severe winter flu season?
 
Nightsong said:
I would like to see someone with access to NHS referral data (presumably at a Trust-wide level although perhaps it is available at a national level as well?) determine whether there are any seasonal (or other timing or event-driven) patterns in the referrals to NHS ME/CFS clinics.

Basis for this suggestion: in November 2024 there was a piece of typically dreadful psychosomatic research that nonetheless included an interesting statement suggesting such seasonality:

However, this was to a paediatric clinic and so referral patterns may be influenced by school holidays and so forth; the obvious next step would be to check whether the same pattern holds across adult clinics.

If there are such patterns, I'd like to see further research to determine whether they relate to ME/CFS onset. I'd also like to see whether it is possible to correlate referral patterns to other events - e.g. is there often a surge of referrals a few months after a particularly severe winter flu season?
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NHS England month-by-month data for July 2021 to Feb 24 is here. https://www.england.nhs.uk/statistics/statistical-work-areas/covid-19-post-covid-assessment-service/
 
Apologies if this was raised already. I would like to see research into the metabolism. Areas as liver, stomach, gallbladder.

Especially since the most severe seem to have a malfunctioning stomach. How is this in the less severe and moderate?

Edit; also because a lot of pwme have issues with food and digestion and there seems to be little research in this area
 
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I'd like to see a study that looks at people who get sore throats during PEM and does throat swabs before and after exercise to see what information can be obtained, including markers of inflammation and existence of pathogens.

I'm not sure I feel comfortable advocating for more studies inducing PEM, but if a study already doing a CPET is being done, I think a throat swab should be added into the tests if enough participants report a sore throat.

Some anecdotes about exacerbated sore throat during PEM can be found here:
 
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I've seen a few studies that look at dust samples from people's houses to see if they can find an association between levels of a chemical in the dust, like PFAS, and risk of disease. It might be interesting to do the same for ME/CFS. Maybe only selecting people that have lived at the same house for many years before developing ME/CFS (and house-duration matched controls).

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Exposure to per- and polyfluoroalkyl substances in residential settled dust and risk of childhood acute lymphoblastic leukemia (2025, International Journal of Cancer)
Exposure to a mixture of PFAS in settled dust was associated with an overall elevated risk of childhood ALL, with EtFOSAA and PFHxS being the main contributors to the positive and negative weights, respectively.
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Phthalate levels in indoor dust and associations to croup in the SELMA study (2020, Journal of Exposure Science & Environmental Epidemiology)
Our results suggest that exposure to phthalates in dust is a risk factor for airway inflammatory responses in infant children.
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House dust endotoxin and wheeze in the first year of life (2001, American Journal of Respiratory and Critical Care Medicine)
These results suggest that home endotoxin exposure may independently increase risk of any wheeze and repeated wheeze during the first year of life for children with a familial predisposition to asthma or allergy.
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Exploring environmental modifiers of LRRK2-associated Parkinson's disease penetrance: An exposomics and metagenomics pilot study on household dust (2024, Environment International)
Among the significant chemicals tentatively identified in dust, two are hazardous chemical replacements: Bisphenol S (BPS), and perfluorobutane sulfonic acid (PFBuS).
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SNT Gatchaman said:
"multiple ED nurses told us they’d never even heard of ME/CFS"
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Maybe it'd be good to do a study that gives people a list of many diseases, including ME/CFS and long COVID, and asks if they have heard of each one. Maybe binary response or maybe multiple choice like "Never heard of it", "I've heard the name but don't know what it is", and "I know what it is". Maybe group people based on occupation.

It'd be interesting to see what diseases more people have heard of than ME/CFS, that are both less common and less burdensome than ME/CFS. Maybe for those less common diseases, one could investigate the history of how they became public knowledge, and try to apply that to ME/CFS.

And the percentage who have heard of different diseases could also be tested for correlation to funding for diseases to see how how impactful it might be to increase awareness.
 
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