How Migraine & Chronic Fatigue Syndrome (ME/CFS) Are Connected: interview with James Baraniuk

[Sly Saint]

Key Questions

• What is myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)?
• Does ME/CFS involve more than just experiencing extreme fatigue?
• How is ME/CFS diagnosed?
• What is post-exertional malaise (PEM)?
• What is the correlation between postural orthostatic tachycardia syndrome (POTS) and ME/CFS?
• Could ME/CFS be underdiagnosed?
• What causes ME/CFS?
• Is there a genetic basis for ME/CFS?
• Do hormones contribute to ME/CFS?
• What is hyperalgesia?
• What is the correlation between ME/CFS and migraine?
• What are the treatment options for ME/CFS?
• How can patients manage pain effectively and avoid medication overuse headache (MOH)?
• Are there lifestyle changes or preventive measures that can help with ME/CFS and migraine?
• How can patients advocate for themselves and educate their doctors about their conditions?
• How can patients participate in research studies for ME/CFS and migraine?

How Migraine & Chronic Fatigue Syndrome (ME/CFS) Are Connected - Migraine World Summit

 

[Dolphin]

Treatments Mentioned

• Activity pacing
• Anti-inflammatory diet
• Antioxidants
• Biofeedback
• Brain retraining
• Carnitine
• CGRP monoclonal antibodies (mAbs)
• Cognitive behavioral therapy (CBT)
• Coenzyme Q10 (CoQ10)
• Cyclobenzaprine (Flexeril)
• Ergot alkaloids
• Hydration
• N-acetyl cysteine
• Occupational therapy
• Pregabalin
• Psychotherapy
• Rest
• SSRIs
• Topiramate (Topamax)
• Tricyclic antidepressants

 

[Dolphin]

Key Questions

• What is myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)?
• Does ME/CFS involve more than just experiencing extreme fatigue?
• How is ME/CFS diagnosed?
• What is post-exertional malaise (PEM)?
• What is the correlation between postural orthostatic tachycardia syndrome (POTS) and ME/CFS?
• Could ME/CFS be underdiagnosed?
• What causes ME/CFS?
• Is there a genetic basis for ME/CFS?
• Do hormones contribute to ME/CFS?
• What is hyperalgesia?
• What is the correlation between ME/CFS and migraine?
• What are the treatment options for ME/CFS?
• How can patients manage pain effectively and avoid medication overuse headache (MOH)?
• Are there lifestyle changes or preventive measures that can help with ME/CFS and migraine?
• How can patients advocate for themselves and educate their doctors about their conditions?
• How can patients participate in research studies for ME/CFS and migraine?

How Migraine & Chronic Fatigue Syndrome (ME/CFS) Are Connected - Migraine World Summit

This was available to watch for free at the time but is no longer available for free.

 

[boolybooly]

marketing the migraine marketing, now only $99

 

[Evergreen]

I don't get migraines, and am very grateful for that, as I know how debilitating they can be, with or without ME/CFS.

But during a hospital admission, a doctor with an interest in ME/CFS wanted to put me on Topamax. Their rationale was that crashes were a kind of migraine. I did not go on it.

In fact, I was just given it along with my other drugs, but luckily the nurse called out the names of each tablet and I said, I'm not on that, and declined to take it until I spoke to the doctor. Spoke to the doctor and...declined to take it. Had to really fend it off for the rest of the admission. (They also wanted to put me on Abilify, which I also fended off. Oh and steroids.)

It just seemed daft to me to take a drug for something I don't have, when there's no RCT evidence of it helping pwME with crashes or anything else. Already on plenty of drugs, including another anticonvulsant (gabapentin for pain), and I saw no reason to mess with my brain more.

Apart from anything, I was dangerously underweight at the time, and a common side effect of Topamax is weight loss. Other side effects include

Tiredness, drowsiness, dizziness, loss of coordination, tingling of the hands/feet, loss of appetite, bad taste in your mouth, diarrhea, and weight loss may occur. Mental problems such as confusion, slowed thinking, trouble concentrating or paying attention, nervousness, memory problems, or speech/language problems may also occur.

If I had migraine, then of course I would have considered it.

Edited to add that they also wanted me to go on steroids - I had forgotten that!

 

[boolybooly]

If you access the list of speakers and their topics by clicking "view pass options" you can see that one of the topics is "Migraine FOMO: Are You Missing Out?"

FOMO is a notorious marketing technique which I have encountered in other contexts, which raises my suspicion this is more about sales than about healing, implying that the companies and people involved are taking advantage of people's pain to make money from them.

I dont find this a credible or trustworthy approach to medicine.

 

[Evergreen]

If you access the list of speakers and their topics by clicking "view pass options" you can see that one of the topics is "Migraine FOMO: Are You Missing Out?"

FOMO is a notorious marketing technique which I have encountered in other contexts, which raises my suspicion this is more about sales than about healing, implying that the companies and people involved are taking advantage of people's pain to make money from them.

I dont find this a credible or trustworthy approach to medicine.

I googled the speaker of that talk, Katie MacDonald. She's a patient and advocate. She explains the FOMO bit here:

Fortunately, I am what is called “highly functioning”. I am able to manage my pain and disability in a way that allows me to continue to be relatively productive on most days. I honestly believe that is due to the support of my friends and family and a healthy case of Fear of Missing Out.

It is better to participate and pay the price, then to miss out … and pay the price. I am in pain every day. I decided a while back that whenever possible, I would rather go be with my friends and take part in an activity, needing extra recovery time from the migraine the outing creates vs opting out of something because I have a migraine. For the later, I miss the fun, I am isolated, but it rarely means less physical pain.
both quotes from https://www.milesformigraine.org/moving-the-needle-the-patients-perspective/

I think for her that makes sense - not doing X rarely means less physical pain for her, so it makes sense to do it. I'm guessing not everyone with migraine has the same experience.

In the ME/CFS context, I think people are constantly knowingly triggering PEM that they know will be manageable or worth it. But for people whose PEM after certain events/things is not manageable, when it's unbearably severe or goes on for weeks or months or just feeds into ongoing deterioration, then in order to preserve the functioning they do have, they're making a wise decision not to do X.

I think there can be a tendency for some, to use her phrase, "higher functioning" people to assume that what they are able to do and get away with is the key to their success, and that if only lower functioning people did the same, they'd be higher functioning too.

Edited to put in a "not" I had omitted so the correct phrase now reads "not doing X rarely means less physical pain for her" and to change the last sentence to what I really meant. I had originally used "moderate" and "severe" but that suggested I saw her level of disability as equivalent to mild ME, and/or that I saw mild ME as entailing little disability, neither of which are what I think. Sorry, words are tricky in brain fog.

 

[Trish]

Some posts have been moved to
Trying unproven treatments - discussion thread

 

[boolybooly]

her phrase, "higher functioning"

Useful background info link, thanks.

In that context FOMO (Fear Of Missing Out) is apparently her justification for being active when in pain. It is unkind not to be sympathetic to pain and I am sorry for her suffering but... ascetic approaches are not recommended because pain is a neurological signal indicating something is wrong. Yes pain can be tolerated and dialled down but not safely disregarded.

... call me grumpy... I just hope she is not promoting the kind of desperation which will encourage sufferers to incautiously 'try anything once', since some of the alleged treatments on offer remind me of the debunked rush for hydroxychloroquine to treat covid, though I appreciate the discussion of specifics belongs elsewhere.

Though this reference to FOMO is possibly due to advocacy aims, I feel a little circumspection is appropriate as I cannot forget Garner and his approach to patient advocacy for PWME, for which I was not particularly grateful since Garner used the alleged personal experience of PVFS to identify as a "high functioning" PWME and tell us we should all believe his BPS chums because he alleged that affirmations and a few fun runs fixed his problem and also he was effectively assuming his condition was comparable to that of people with ME who get serious PEM from going to the bathroom, which is just not safe or kind. Not to mention his involvement with Cochrane bias.

I agree migraine should be studied and understood. I am getting them as a result of my version of longcovid. My uncle suffered from them and mother has too. Mine are undoubtedly due to immunological inflammation of some kind and involve blood thrombogenicity.

I am sure that is all real and that Prof Baraniuk is sincere but I am just deeply suspicious of the health market and actors therein charging $99 for access to alleged science as I feel it is increasingly difficult to distinguish pure science from marketing and profiteering.