US ME/CFS Clinician Coalition: Guideline - Diagnosing and Treating ME/CFS, 2019, and new website 2020

No I am not doing that. Some of the medications on the list are standard pain medications, I agree. So there is no particular need to put them in to a list for ME - you just follow normal practice. But a good number of the drugs suggested, like duloxetine or pregabalin are not useful for general pains. They are supposed to have some magic effect on people with central sensitisation or something. I see no evidence that that is relevant to ME. It might be to fibromyalgia but that is a different issue.

 

High blood pressure deserves standard investigation and treatment but it has nothing to do with ME as far as we know. So there is no reason to put it in to a list of drugs for ME.

 

Yes I re-read it and edited my post! They provoked NMH at the trial.

 

They (pregablin, duloxetine, gabapentin and amitryptyline) are in the neuropathic pain guidelines. They’re not only for fibromyalgia and central sensitisation. These are tried once the usual ones like paracetamol and ibuprofen don’t work. And many are the pain medications available to those with chronic or neuropathic pain. So it is relevant to ME. (which is why I think neuropathic pain is in the new draft NICE guidelines too, although I think the draft guidelines could say a lot more on pain).

 

At the 2013 FDA meeting on drug development for ME, Peter Rowe acknowledged the results of that trial and asked whether he should believe that trial or his "lyin eyes" when he saw the positive impact it was having on his patients. Its certainly has had a significant positive impact on the cases I am most familiar with

But @wigglethemouse noted the specification liisted for using that drug

For common variable immune deficiency (CVID), low IgG, low IgA, ParvoB19 antibodies, recurrent infections. Best done in consultation with an immunologist to determine most appropriate therapy. ​

Getting IVIG requires specific lab tests to demonstrate e.g. CVID. So should it not be used when those criteria are met when the patient has an ME diagnosis?

 

The reasoning: "we can see what the trials cannot" doesn't make much sense to me.

If doctors can see with their own eyes that the treatment works, it must be a pretty strong and obvious effect because there are so many confounding factors (age, sex, illness severity etc.) that make it difficult to know what caused an improvement.

If it is indeed a strong effect that doctors can see in clinical practice, it should be really easy to find a treatment effect in a randomized controlled trial because those trials act like a magnifying glass because they reduces confounding factors.

It could be that the treatment has a small effect or one that is present only in a subgroup of ME/CFS patients and that the trials were statistically underpowered to pick up on such a signal. But in that case, the clinical intuition of doctors would probably be even less able to pick up on such a treatment effect.

 

It does have something to do with ME because a subset of patients have dysautonomia, and a subset of those will have autonomic issues related to high blood pressure eg postural hypertension; and a subset will have lower blood pressure related to exertion / posture. This is different to standard high blood pressure. To deny this makes no sense.

Im genuinely not sure why you are arguing against PwME having access to medications that improve their quality of life and treat recognised co morbidities and symptoms, in specific circumstances, where they exist. Or why you’re arguing they don’t have anything to do with ME when they do.

 

No funding, underpowered trials, lack of clinicians and academic centers to participate in such trials are just a few of the issues that make it difficult to do such trials.

Rowe, Speight and a number of others produced the 2017 pediatric primer which has guidance based on their clinical experience for treatment of OI depending on the presentation of the patient.
https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

Edited to add - I'm certainly not arguing against the need for clinical treatment trials. I'd say these are reasonable places to start for trials of treatments that can reduce the burden of the disease while in parallel, we are doing the research to understand the mechanisms and fully elucidate the subtypes. Such studies could potentially be designed in a way to help add to the knowledge of the disease mechanism.

 

@Medfeb the other problem is that by the nature of how the trials are done, it’s going to exclude a lot of patients esp who are severe, and many who are moderate as well. A tilt table test is extremely taxing, it would have been impossible for me even at my best, at the end of moderate/severe. The trial excluded those who had already been taking medication beforehand, even though most participants had ME for at least 3 years. This probably does mean most people who had severe OI symptoms wouldn’t have been able to participate at all. So already that’s two big issues with how they picked their sample and to what extent they had OI symptoms or how medication could have an impact on them.

Not all people who have OI on a tilt table may necessarily get symptoms either - I don’t know. It may be like pain, different for different people. If my heart rate goes up even by 10bpm it makes a big difference to my dizziness. But for someone else, it might not make much difference. The point being if the sample is not representative of ME patients (including those who have symptoms from OI), and then they used subjective questions, then it’s not going to be enough to rule out OI or the medication helping.

 

This message was recently posted on their website (line breaks added):

For more information see this document:

US ME/CFS Clinician Coalition Consensus Statement: Diagnosing ME/CFS in People with Long COVID, April 2023

https://solvecfs.org/wp-content/uploads/2023/04/MECFS-Diagnosis-in-Long-COVID-April-2023.pdf

EDIT: The website actually points to this google document:

I got the PDF (which looks like it was stored by Solve ME) from somewhere on social media. I have not compared them but I'm pretty sure they are identical.

 

Thank you for posting.

The website above points to the Clinician Coalition Google Docs area. Both documents are the same.

 

Thanks for checking!

I was pretty sure it was the same but I didn't have the energy to compare documents.