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

Trish said:
'The Nature of ME/CFS'
I agree that 'amplified pain' makes no sense to me. I have pain in my muscles all the time that increases with use and takes ages to recede when I rest, but I have no idea what they mean by suggesting it is 'amplified'. Is that a medical term
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This refers to central sensitization.

from first view, it seems to be a mishmash of each one of the physicians in this group. I can recognize who got the MCAS part and who owns the meditation part.
 
Trish said:
However much of a 'management plan' you have with this illness, you can't get around the fact that ME places an unpredictably shifting limit on activity and punishes with PEM when real life forces us to exceed it.
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This one dr i know is all about management plan and CBT aimed at pacing activities, and if the patient crashes, then it’s because the patient deviated from that plan, they didn’t pace properly
 
adambeyoncelowe said:
I suspect the 'amplified pain' thing is about allodynia, and perhaps even migraine and muscle pain during PEM? I.e., there are times when pain gets worse. It's not very clear, though.
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As Milo said, "amplified pain" is not simply the experience of pain, it is increased central sensitivity (with respect to pain). As Hutan says, this is not regularly found in studies of ME/CFS patients, with many studies finding no difference.
 
Snow Leopard said:
As Milo said, "amplified pain" is not simply the experience of pain, it is increased central sensitivity (with respect to pain). As Hutan says, this is not regularly found in studies of ME/CFS patients, with many studies finding no difference.
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I was trying to be generous. ;)
 
Snow Leopard said:
As Milo said, "amplified pain" is not simply the experience of pain, it is increased central sensitivity (with respect to pain). As Hutan says, this is not regularly found in studies of ME/CFS patients, with many studies finding no difference.
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Some of the physicians who are part of this group believe it, and teach that to their patients as part of the CBT curriculum.
 
Don't know if these are the same but just got an email from OMF:

New Resource Available for People with ME/CFS!



Exciting news! The U.S. ME/CFS Clinician Coalition has released new resources for people with ME/CFS to bring to their health care providers for diagnosis, testing, and treatment recommendations.



Read the Coalition Recommendations Announcement here.



The resources include a document on testing recommendations and a document on treatment recommendations to help patients and their healthcare providers with the overall care and management of ME/CFS.



OMF’s goal is to empower caregivers and people living with ME/CFS to manage their health today while we search for tomorrow’s answers. We hope you find these new documents to be helpful in navigating the complex world of ME/CFS.



Be sure to also check out OMF's Resource Center! This webpage includes parent resources, information to share with your doctor, general information on ME/CFS, and more. We will continue to share with the community whenever the page has been updated with new, verified information.
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Looking through the recommendations for treatment this looks like a muddle of unproven therapies of a sort that nobody should be recommending. At least NICE have used some sort of evaluation of evidence. This looks like old-fashioned 'clinical judgment' that should have been pensioned off fifty years ago.

If we are gaping to take the BPS people to task over unproven and potentially dangerous treatments surely the same needs to be done for pharmacological therapies? There is no way I would recommend PWME use saline infusions, duloxetine or IVIG.

I am afraid this needs calling out.
 
@Jonathan Edwards a lot of these are symptomatic treatment. Many of the medications listed for pain are used in Fibromyalgia (edit, and chronic pain in general) - various GP’s have prescribed most of those to me at one time or another to try for fibromyalgia / ME / chronic pain. Duloxetine is one of those chronic pain or fibromyalgia medications. They are not really controversial. Others like beta blockers and related are used commonly for orthostatic intolerance or when heart rate is high or to bring blood pressure down/up, and not just for ME/CFS patients. Many of the sleep medications are the pain medications. There are a few meds in each of the sections I don’t recognise / I think aren’t used commonly in the U.K. in favour of other meds (or not really prescribed eg LDN), but apart from the cognitive impairment & immune sections, a lot of those meds are familiar to me and I suspect very familiar to a lot of ME/CFS patients especially those who live with pain and poor sleep and heart rate problems.
 
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Jonathan Edwards said:
Looking through the recommendations for treatment this looks like a muddle of unproven therapies of a sort that nobody should be recommending. At least NICE have used some sort of evaluation of evidence. This looks like old-fashioned 'clinical judgment' that should have been pensioned off fifty years ago.

If we are gaping to take the BPS people to task over unproven and potentially dangerous treatments surely the same needs to be done for pharmacological therapies? There is no way I would recommend PWME use saline infusions, duloxetine or IVIG.

I am afraid this needs calling out.
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I mostly agree with you, but in terms of rating evidence, the local program has A-evidence for CBT and recommends tai chi and yoga. We have no evidence. They also have a policy of ‘the doctor will see you as little as possible’
 
Lets be careful about quoting out of context. IVIG is very very expensive and insurance companies are very thorough in only providing it where medically necessary for recognised conditions. This is what the document states for IVIG.
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.
An immunologist can help facilitate insurance
coverage. Go slow and always use premeds to
reduce side effects, particularly in patients with mast
cell activation syndrome. Often divide dosing to q 1-
2 weeks. Insurance may require documented poor
response to pneumovax.
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I wish all ME/CFS folks could get the comprehensive work up described in the testing recs. How many folks have treatable conditions or perhaps don't even have ME/CFS? We don't know because most don't get a comprehensive work up.
 
lunarainbows said:
They are not really controversial. Others like beta blockers and related are used commonly for orthostatic intolerance or when heart rate is high or to bring blood pressure down/up, and not just for ME/CFS patients. Many of the sleep medications are the pain medications. There are a few meds in each of the sections I don’t recognise / I think aren’t used commonly in the U.K. in favour of other meds (or not really prescribed eg LDN), but apart from the cognitive impairment & immune sections, a lot of those meds are familiar to me and I suspect very familiar to a lot of ME/CFS patients especially those who live with pain and poor sleep and heart rate problems.
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Well that is my point, really, they should be controversial since there is no good evidence for value in ME/CFS. As far as I know there are no relevant trials - at least for CBT there were trials.

If pulse rate goes up during orthostatic intolerance that is probably a sign that it needs to go up to maintain blood flow so it does not seem sensible to block it. I have been put-on beta blockers in the past and when I looked in to it it became clear that my cardiological colleagues really don't have much logic other than a sort of knee jerk 'if its up put it down'. That may not be good for people. There have to be trials with documentation of harms - exactly the same argument,ent as for GET.

These drugs are familiar to ME/CFS patients because so many physicians hand them out as dangerous placebos.

Duloxetine is another drug I have experience of the adverse effects of, which are nasty.

There seems be an attitude that as long as treatments are 'biomedical' they must be OK and if they are 'psychological' they are not. We need a level playing field. The psychological treatments at least have been tested and the remaining problem is that the testers won't accept their own results. The biological treatments have not been properly tested the context and many of them are completely inappropriate. IVIG has nothing to do with ME/CFS. The usage in CVID has nothing to do with it. IVIG was trialled in ME for reasons that are unclear and in the end the results did not justify usage. By and large there is no reason to investigate PWME for immunodeficiency since the symptoms of ME are not symptoms of immunodeficiency.

If physicians are allowed to advise on the basis of chummy agreements about what are good placebos then we are not in position to call NICE out for doing the same for psychotherapy.
 
Jonathan Edwards said:
Well that is my point, really, they should be controversial since there is no good evidence for value in ME/CFS. As far as I know there are no relevant trials - at least for CBT there were trials.

If pulse rate goes up during orthostatic intolerance that is probably a sign that it needs to go up to maintain blood flow so it does not seem sensible to block it. I have been put-on beta blockers in the past and when I looked in to it it became clear that my cardiological colleagues really don't have much logic other than a sort of knee jerk 'if its up put it down'. That may not be good for people. There have to be trials with documentation of harms - exactly the same argument,ent as for GET.

These drugs are familiar to ME/CFS patients because so many physicians hand them out as dangerous placebos.

Duloxetine is another drug I have experience of the adverse effects of, which are nasty.

There seems be an attitude that as long as treatments are 'biomedical' they must be OK and if they are 'psychological' they are not. We need a level playing field. The psychological treatments at least have been tested and the remaining problem is that the testers won't accept their own results. The biological treatments have not been properly tested the context and many of them are completely inappropriate. IVIG has nothing to do with ME/CFS. The usage in CVID has nothing to do with it. IVIG was trialled in ME for reasons that are unclear and in the end the results did not justify usage. By and large there is no reason to investigate PWME for immunodeficiency since the symptoms of ME are not symptoms of immunodeficiency.

If physicians are allowed to advise on the basis of chummy agreements about what are good placebos then we are not in position to call NICE out for doing the same for psychotherapy.
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Your ideas are logical, but there seems to be a horrible consequence in where we do nothing because we do not understand the disease, and we do not fund the disease because we do not understand the disease. We have been playing this game for 3 long decades. What is the best approach? Doing nothing, still? Waiting another 20 years for science to find what’s wrong and finding a treatment that may halp a third of us?

i totally understand and support clinical trials in finding out best possible evidence for effectiveness and safety of a treatment, but very honestly we are nowhere near a treatment target.

So what to do? People take matters in their own hands. How to resolve this?
 
@Jonathan Edwards it’s not controversial because those are the meds that are prescribed for any type of pain, and chronic pain, in any compassionate chronic pain or pain clinic in the U.K or GP clinic. You are arguing for us to not give medications to patients who have ME and who have chronic pain, on the basis it’s not been tested in their population alone. That’s not how pain medication has ever worked in practice though. The same medication is used for all types of different conditions.

So then ME would be treated differently, which means pain medication to be withheld that would be given otherwise if they had any other condition, and so patients with ME who live with pain would go without symptomatic relief.

And you’re saying the same for sleep and for heart rate and blood pressure. But it makes a person extremely ill or it can be dangerous to be fainting every few minutes, or to have blood pressure that goes extremely high just on sitting upright or the slightest exertion like I did. Or can make someone feel very ill to have very high heart rate and dizziness on exertion. No it’s not because it’s biomedical it should be used - it’s because this is symptomatic treatment and to not do so, is not a compassionate thing to do and doesn’t make any sense. It is good to do trials but we don’t have those yet. ME is not any different to other chronic illnesses in that we don’t deserve pain, or sleep, or blood pressure treatment, that we currently have, or other symptomatic treatment.
 
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Some of the treatments listed have been trialled in ME/CFS, often with negative results (caveat: lack of statistical power might also be an explanation for this).

In our study of adults with CFS, fludrocortisone as monotherapy for NMH was no more efficacious than placebo for amelioration of symptoms.
Fludrocortisone Acetate to Treat Neurally Mediated Hypotension in Chronic Fatigue Syndrome: A Randomized Controlled Trial | Neurology | JAMA | JAMA Network

Amantadine was poorly tolerated by the CFS patients. Only 15 were able to complete 8 weeks of treatment, the others had to stop taking the medicine due to side effects. In those individuals who completed 8 weeks of treatment, there was no statistically significant difference in any of the clinical parameters that were followed.
Amantadine and L-carnitine treatment of Chronic Fatigue Syndrome - PubMed (nih.gov)

The primary efficacy measure of general fatigue did not significantly improve with duloxetine when compared with placebo.
A randomized, placebo-controlled, double-blinded trial of duloxetine in the treatment of general fatigue in patients with chronic fatigue syndrome - PubMed (nih.gov)

Intravenous immunoglobulin cannot be recommended as a therapy for the treatment of CFS. A better understanding of the pathophysiology of this disorder is needed before effective treatment can be developed.
Intravenous Immunoglobulin is Ineffective in the Treatment of Patients with Chronic Fatigue Syndrome - ScienceDirect

Methylphenidate at a dose of 2 × 10 mg/day is significantly better than placebo in relieving fatigue and concentration disturbances in a minority of chronic fatigue syndrome patients.
Does Methylphenidate Reduce the Symptoms of Chronic Fatigue Syndrome? - The American Journal of Medicine (amjmed.com)
 
@Michiel Tack

just on two of those studies, in the study using fludrocortisone, all that was needed for the study was a diagnosis of CFS, they didn’t need a diagnosis of postural hypotension to be enrolled in the study, as far as I can see? That medication is used to raise blood pressure, so would be useless or even harmful if the patient had high blood pressure on standing or didn’t have changes in blood pressure. It is a co morbidity. Edit: no, I was wrong, they had NMH provoked during the trial (but not a previous diagnosis I think). or other types of postural hypotension.

Edit 2: I noticed people who had already been taking fludrocortisone for 2 weeks previously weren’t allowed to join, meaning potentially those who may have had significant orthostatic hypotension type symptoms (from NMH or PoTS etc), leading them to seek treatment previously and not want to stop, may have been missed on the trial. Ie it could have selected for those who have less symptoms even if they have hypotension. They also confirmed beforehand the patients would be able to tolerate the trial and testing (tilt tables are very difficult and would be impossible for many if not the vast majority with severe ME), which makes sense, but it means more severe patients who might benefit more from BP/HR treatments weren’t included. The tilt table was repeated, but otherwise outcomes were done on questionnaire ie how good are you feeling. This is also for those who had NMH provoked during testing and not for PoTS (heart rate increase specifically), although if they were found to have PoTS they weren’t excluded.

They also say, based on the study, they can’t rule out that it could help.

Duloxetine isn’t commonly used for fatigue associated with ME. It’s listed as a pain medication in the clinician guidelines. It is a common pain medication for chronic and neuropathic pain.
 
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Milo said:
but very honestly we are nowhere near a treatment target
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Milo said:
So what to do? People take matters in their own hands. How to resolve this?
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It has to be approached like any other illness rather than a playground for quacks.
If we are nowhere near a target treatment then groups of doctors should not be pretending they know what to do.
 
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