Last week Health Rising highlighted one role that #MEAction, in its capacities as a superb communication resource, provides: outreach to the scientific community. Today we focus on a surprising side of MEAction: as a generator of scientific data. MEAction doesn’t have the money to do biological research, but it does have access to a large population and access to researchers. With the Chronic Illness Survey Adventure, it’s combined the two to bring something unique to ME/CFS and the complex illness field it’s embedded in.
What symptom cluster describes you best?
Casting a Wide Net
The survey is casting a wider net than any survey I can remember. As many of us know from personal experience, ME/CFS doesn’t stop at “ME/CFS” but is enmeshed in a wide variety of other conditions. That fact, though, is almost totally ignored when it comes to research efforts.
Despite the fact that postural orthostatic intolerance syndrome (POTS), for instance, is quite common in ME/CFS, you can probably count the number of studies that assess the similarities and differences between both disorders on the fingers of one hand. Even fibromyalgia patients are rarely included in ME/CFS research studies and vice versa.
The fact that a melange of conditions (fibromyalgia (FM), postural orthostatic intolerance syndrome (POTS), irritable bowel syndrome (IBS), long COVID, hypermobility Ehlers Danlos Syndrome (hEDS), mast cell activation syndrome (MCAS), migraine, etc.) overlap in a kind of complex disease soup suggests that similar processes are at play in them. Research into that, however, is in its infancy.
It seems that a connective tissue cluster, for instance, must be present in ME/CFS, POTS, etc., but no one, to my knowledge, has done the work to determine what it looks like. Many of us know about hyperflexible joints and craniocervical instability, but other, more subtle connective tissue problems exist. I, for instance, don’t have any evidence of hyperflexible joints – quite the opposite – but I do have a connective tissue condition called pectus carniatum. On what branch of the connective tissue cluster do I fit, I wonder?
The survey results, ultimately, will provide an opportunity to link genetics and biological data to a more fine-tuned understanding of symptoms that flow through this massive complex disease group. Its ability to illuminate heretofore unknown symptom clusters could lead to some interesting treatment opportunities for people who never dreamed that “x” drug might work for them.
Packed with Bona Fides
The Symptom Cluster Characterization in Complex Chronic Disease (or SCCCCD?) (better known as the Chronic Illness Survey Adventure) was created by MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, in collaboration with Mady Hornig MD, and Peter Robinson MD at the Human Phenotype Ontology Project at Jackson Labs.
The Human Phenotype Ontology Project has been digging deep into symptoms of rare diseases and pairing them with genes for years, but Seltzer reported that it’s now moving onto more complex, common diseases such as the “ME/CFS complex”. This group excels in producing algorithms that capture sets of symptoms – and matches them to genetic findings. It would be surprising, given the involvement of this group, if clusters of symptoms didn’t pop out that we currently have no idea exist, and which provide a new window on how to view these diseases. Just the fact they’re working with us is a success in my book.
Seltzer et al. made sure the data collected was: a) useful, and b) translatable to other efforts, by using the NINDS Common Data Elements Project to guide the choice of symptoms used in the questionnaires.
Besides the people who participate online, Dr. Cindy Bateman, Dr. Sue Levine, and Dr. Hector Bonilla are providing rigorously characterized patients to the project – giving the project a nice foundation.
In short, this survey is loaded with bona fides. It’s been informed by researchers who specialize in the field of symptom assessments, and includes some of our top ME/CFS doctors.
Ready to start on an adventure?
Taking the Chronic Illness Survey
The theme for the Chronic Illness Adventure was based on a 1980s game.
The Chronic Illness Survey is targeting five illness groups (ME/CFS, POTS, long COVID, hEDS, and MCAS) to see how their symptoms differ, how they’re similar, how they’re triggered, and how they evolve over time, etc.
(The Survey would have loved to include more diseases such as ADHD, ASD, CCI (craniocervical instability), chronic Lyme, fibromyalgia, Gulf War Illness, and multiple chemical sensitivities – and hopefully will in the future – when it has more funding.)
One way to get those diseases in there – I would be really interested in MCS – is to participate in this survey. The more people who participate in this survey, the more data it will have and the more successful it will be – and the better chance we’ll have for it to grow.
The Survey, which opened last year, is a three-step project, and I’ve taken the first two steps. The steps didn’t take long to finish and you can save your place and rest. If you’ve ever been into gaming – note that the Chronic Illness Survey Adventure is presented in the style of the 1980s era Sierra Adventure games – and you get to win medallions on the way :).
Jaime noted that the Survey attempts to capture the lived experience of the people who have these diseases – something most surveys are poor at. The survey helped me understand something about a symptom I regularly experience. I realized that what I’ve called my “uplifts” – which occur when my upper torso seems to dramatically heave up – probably constitute a big sigh.
That’s interesting to me as sighing actually plays a crucial role in our physiology. Everyone, healthy or not, sighs regularly. Since I got ME/CFS, though, my signs are of an order magnitude greater than they used to be. (A blog on breathing will explore this more.)
Survey Eligibility
People who are 18 or older and have been diagnosed by a medical provider with ME or ME/CFS, POTS, hEDS and/or MCAS, or have a suspected diagnosis of long COVID, or who do not have chronic disease (apparently the healthy controls) are eligible to take the survey. Anyone, anywhere can take the survey.
The Chronic Illness Survey provides a unique opportunity to help us learn about a crucial and largely unexplored aspect of ME/CFS – the rich and complex disease world it lives in. By uncovering the linkages between these complex diseases – and highlighting the bigger disease complex they exist in – the survey should help illuminate a too often hidden and understudied world of diseases that affect millions of people, and hopefully spark interest in them.
I like the idea behind this very much, but I just got started & already have feedback….not sure how to pass it along to the survey people, but the sign up site alone may be enough of a problem that many won’t be able to handle it. I barely did & I know that there are many with ME who have similar issues.
The site where you learn more & sign up is extremely hard to look at without feeling very sick. All the bright colors & the movement going on are goign to be issues for more than just me. It was also not easy to find the actual place where you do go to sign up.
Also, I am now doing the survey & the question re rating your wellbeing does not give good choices. For exp, even if someone is severely disabled, it does not mean that they require hospitalization.
My mistake Tammie. I changed the link to send people straight to the signup page – a nice blank page that hopefully few will have trouble with.
This survey is a great idea and I hope many people get through it.
Thanks for the suggestion regarding the question as well – every time I take a survey – no matter how good it is – I find things I think could be done better 🙂
I couldn’t get into the survey to complete it. Went through process twice of entering my username (what is that?) and email address, and got nothing in my email box or spam folder.
Ampligen: Martin asked about its status. The FDA did not like the protocol the biotech used to justify approving Ampligen for MS/CFS. It is available in Argentina for ME/CFS, and in Europe for Pancreatic Cancer. When Dr. Peterson’s patients in Incline Village began to contract ME/cfs, he became an expert concerning the disease. (Peterson’s is a GP.) Dr. Peterson has written several papers concerning the re-emergence of EBV virus, HHV-6 virus, and parvovirus B19, in ME/CFS patients. Ampligen is a double stranded RNA nucleotide chain that supposedly triggers an RNAase L enzyme to enhance viron destruction. It is expensive: ~$30,000/year.
***Dr. Peterson used Ampligen to treat his Incline Village, NV patients. Some had life changing responses.
Ampligen Status:
https://clinicaltrials.gov/ct2/show/NCT00215813
Shame it doesn’t include FND (functional neurological disorder) too as I personally believe this is under the same umbrella as ME/CFS.
How does one get involved in the survey?
Click on the link at the bottom of the page. FND sounds really interesting – if we can get enough people to do this survey hopefully they’ll add more diseases to it.
So, does this mean we should take the survey, even if our primary diagnosis is Fibromyalgia?
Eh, no. I can see in the survey directions that we do not. Maybe there will be a next time.
My understanding was that if you’ve been diagnosed by your doctor with one of the four diagnosed (ME or ME/CFS, POTS, hEDS and/or MCAS) or if you have long COVID) you can participate in the survey; i.e. even if your primary diagnosis is FM but you’ve been diagnosed with one of the other ones you can participate in the survey.
I just completed sections 1 and 2. The data extrapolation will be interesting since there are so many symptoms involved. It also made me think as I know I pay attention to the more bothersome symptoms but really don’t think much about more “normal” ones like sinus issues, etc. good to be aware of the full spectrum. We never know what they might discover for all of the various subsets. Thanks, Cort for covering this as I think it is very important for people to participate.
Cort, this is for you;
“Pectus carinatum can also be associated with a variety of genetic disorders and syndromes, including Marfan syndrome, Noonan syndrome, Morquio syndrome, homocystinuria, osteogenesis imperfecta, Coffin-Lowery syndrome, cardiofaciocutaneous syndrome, and certain chromosome abnormalities. In these cases, the condition has an underlying genetic factor.”
(The site I got this from is still under construction so giving you the address will not be so helpful–but it is from a recognized medical institution).
There are over 200 genetic connective tissue disorders! As with EDS they can present on a continuum and are way less researched than ME/CFS. You called this mix of disorders a ‘soup’ and that is how I perceive it and what actually made your request that I write an article about EDS beyond challenging.
Have you had your exome sequenced? Might be a reasonable idea–if–a top notch geneticist can interpret.
Thanks, Nancy. 200 genetic connective tissue disorders – whoa! I wouldn’t surprised if that connective tissue problem combined with something else to create a mess. I believe the blood vessels are connective tissues…
Yes Cort, the blood vessels are connective tissues. Actually approximately 1/3 of the body is comprised of connective tissues and teeth and bones can be affected as well!
I’ve had my genome sequenced. Also gave Ron Davis several tubes of blood a few years ago for his research. The problem for folks like us, I believe, is finding that “top notch” geneticist who can make heads or tails of our genetic problems, beyond the more common ones that most can diagnose.
I’ve been tested for various flavors of EDS, but all came back negative. So the hEDS diagnosis continues to stick, even though my medical history since birth has closely matched Loeys-Dietz more than anything else. But Stanford dismissed the LDS diagnosis for lack of an aortic aneurysm, even though skeletal problems like clubfoot and scoliosis were present at birth, and I have tortuous and dilated arteries in my neck and the base of my brain that are compressing some cranial nerves.
It’s like our patient cohort very closely fits several connective disorders without fitting any of them perfectly. So frustrating!
Cort, Since the controversial drug Ampligen has been mentioned, have you ever researched ozone, hyperbaric oxygen, or Tens Unit stimulation of the Vagus nerve to treat ME/CFS? Gulf War Syndrome patients have had success with all three.
Hi Richard,
Yes, hyperbaric oxygen and VNS both look interesting
https://www.healthrising.org/blog/2015/06/26/new-age-fluff-or-real-treatment-fibromyalgia-hyperbaric-oxygen-therapy-study-opens-eyes/
Vagus nerve stimulation
https://www.healthrising.org/blog/2016/01/11/vagus-nerve-stimulation-fibromyalgia-chronic-fatigue-syndrome-mecfs/
https://www.healthrising.org/blog/2022/02/03/fight-flight-fibromyalgia-chronic-fatigue-parker/
I have tried low level (soft chamber) hyperbaric without impact. I would be interested to know how others have fared. Since insurance doesn’t cover it I only went six times.
I signed up and completed two sections. The next section, it tells me, will be published in November 2021! We seem to be a bit behind the curve!
Some of the questions were difficult to answer because I don’t do things that will exhaust me so I can’t evaluate what happens if I do them.
Yes, I’m certainly behind the curve as well. I planned to do this last year and am glad it’s still open as I really like the idea behind the survey.
Cort, thank you for putting link to survey, as I rarely get into email.
Couldn’t get into the survey to fill it out. Put in my “username” and email address, went to check my inbox and my spam, and there was nothing. Went through the process twice. Nothing came to my inbox (or spam folder).
“Unless you care to miss a lot, you choose to throw out a broad net and see what emerges”
-Dr Stephen Straus. Oct 30 1986.
This was Dr Straus’s reaction to hearing about the newly discovered HBLV virus which was the first major blow to his CEBV syndrome hypothesis.
The first step in the abandonment of CEBV syndrome and the first toward the necessity to create a replacement that did not incriminate EBV.
Completed as much of the survey as I could. As some have commented, some of the choices do not really apply and surveys where this occurs really bother me. Can’t help thinking that the researchers may miss a lot by not allowing patients to amend the choices–or at least a box for comment.
Cort, I have a request. Since I now am trying yet another doctor to treat my ME/CFS symptoms, she has introduced a concept of molecular mimicry of food substances being the cause of my ME/CFS, (and many other inflammatory conditions). Is there any research on this specifically and if so, can you present it?
I know many people tie diet with symptoms, however, I think I eat a relatively healthy diet and almost never experience things like gut pain, bloating, etc. and have tested negative for celiac and lactose intolerance. My doctor is convinced that dairy, wheat and foods containing lectins are the probable cause of my high CRP. I’m not so sure but will do a trial diet just to check. I do wonder if my Ehlers-Danlos is part of my problem and not necessarily my diet.
Where do others stand on this issue? What is the latest research? Is food molecular mimicry being researched as a cause of ME/CFS?
Me again, doing my Sunday Internet research. Came across this International study indicating that using NSAIDS for acute pain can interrupt the healing process and lead to chronic (much, much longer) pain.
https://www.painnewsnetwork.org/stories/2022/5/11/anti-inflammatory-drugs-may-lead-to-chronic-pain
Gives me pause in considering how to deal with my own pain…
The British Health Secretary has just announced their impetus for research into ME:
https://meassociation.org.uk/2022/05/important-ministerial-statement-on-me-cfs/
“At the heart of the delivery plan will be two core principles. Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS.”