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

Can you explain the difference for me please .

 

Absolutely .
When symptoms of anxiety or depression are secondary, it means another, primary disease, is causing them. This can either be because of how the disease, it's severity, symptoms and consequences for your life impacts the person on a psychological level, or because of a primary illness that has anxiety as one of it's symptoms.
In both cases the anxiety is just a part of and not dominating the whole picture of symptoms.

An example of the latter would be hypothyroidism, which typically includes anxiety as a symptom. Thyroid status is one of the things psychiatrists routinely check to make sure symptoms of anxiety aren't caused by an underactive thyroid, for example.

Getting a cancer diagnosis for example, can lead to acute anxiety because of the potential mortality, the fear and worry of living with the disease and going through treatment during a long period of time can then lead to a more long-lasting anxiety. But the cancer is the primary diagnosis and the anxiety has developed as a result of the cancer.

Saying that the anxiety and/or depression often experienced by ME patients is mainly secondary instead of primary, to me acknowledges the severity of the disease and the suffering of patients.
It also counteracts the misconceptions of ME being psychosomatic, in that anxiety and depression ensues the development of ME, not the other way around, and that people that fall ill with ME are no more prone to anxiety and depression than the general population.

We of course already knew all this, but it's nice to see renowned ME clinicians make this discernment.

And in our case I'm thinking it's not just the disease and how it wrecks your life, but the stigma, lack of support and health care, harmful treatments, gaslighting etc that can cause anxiety and depression, which must also be considered secondary as it's ultimately a consequence of the disease.

Edit: clarity

 

Sorry, yes I already understood the bit about secondary conditions, but thanks very much for clarifying anyway. The bit I did not understand was that I assumed comorbidities were secondary by implication anyway, but I'm clearly wrong on that.

 

Oh, sorry I misunderstood!
Exactly, the standard definition of comorbid conditions doesn't imply causality, (although more recent uses sometimes refer to conditions being related in some way, so your assumption is understandable).
Even though comorbidities can sometimes be caused by a primary diagnosis, the term refers simply to the co-occurence of two or more physical or psychiatric conditions.

The primary diagnosis is the illness that's most severe/causing the most symptoms and/or disability, and it can in turn become a comorbid condition, for example if the condition improves and another disease develops that takes precedence in its effects on daily life, symptoms and physical function.

"The term "comorbid" has three definitions:

1. to indicate a medical condition existing simultaneously but independently with another condition in a patient (this is the older and more "correct" definition)
2. to indicate a medical condition in a patient that causes, is caused by, or is otherwise related to another condition in the same patient (this is a newer, nonstandard definition and less well-accepted).[2]
3. to indicate two or more medical conditions existing simultaneously regardless of their causal relationship. "

https://en.m.wikipedia.org/wiki/Comorbidity
Hope that wasn't TMI.

 

No it wasn't TMI, just right in fact. Many thanks for that.

 

MCG Pediatric Podcast
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
June 1, 2020
Join adolescent medicine specialist Dr. Robert Pendergast and MCG pediatric resident Dr. James Davis as they discuss Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

What is ME/CFS?

How to make the diagnosis?

What comorbid conditions need to be considered?

How do we help patients with this uncommon but debilitating condition?

 

Don't know if these are the same but just got an email from OMF:

 

These are more detailed recommendations for specific tests and treatments that can be used in conjunction with the general guidance on the basics of diagnosis and management provided in the coalition handout that started this thread.

 

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.

 

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.

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.

 

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.

 

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.

 

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.

 

This one by Peter Rowe required patients to have neurally mediated hypotension. It concluded:

"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 - PubMed (nih.gov)

 

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.

 

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.