Collecting papers on Evidence Based Practice for ME (plus distinction from FND)

[ElephantNerd]

There is some chatter in my professional field regarding FND. I'm working on an advocacy letter within my professional field trying to explain that:

1. MECFS is a physical disease separate from FND.

2. Some patients labeled as having FND are misdiagnosed and actually have MECFS, POTS, long COVID, or other complex chronic illnesses that involve brain fog, and it's important to recognize when FND based approaches are worsening the patient's health to refer for further testing, since FND is a common misdiagnosis for these other illnesses.

3. There is evidence of physical disease process in MECFS.

4. Despite the plethora of peer reviewed articles promoting CBT as a viable treatment option for MECFS, these studies usually overlook long term outcomes of unmanaged MECFS.

5. There is solid research debunking CBT as a viable treatment for MECFS.

6. There are some (wish there was more) evidence based treatments for MECFS and POTS. I'm especially interested in pacing and OI treatment evidence, but others are welcome.

7. There are rumblings that some researchers may be finding evidence of physical disease process in FND and/or functional seizures. Either way, we cannot rule out the possibility that FND has a physical disease process (pls correct my wording) that we haven't found yet, just as MS was misunderstood until someone finally found a way to see the damage to the myelin sheaths.

I have included in my draft a link to Tuller's Trial By Error blog, as well as two pieces by Rehmeyer: https://www.theopennotebook.com/202...uracy-and-sensitivity-on-contested-illnesses/
And
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

And this interesting piece I found on Long COVID vs FND: https://pmc.ncbi.nlm.nih.gov/articles/PMC11355889

I'm perusing this forum for more sources but I'm not very good at searching yet, and I'd like to get this advocacy letter out soon. Any links to peer reviewed and/or respectable articles related to the points above are most welcome!! I don't necessarily need links for every point but I think the more info I have the better.

I'm currently unable to work, but at least I can hopefully have a positive influence on my field regardless of my abilities at this time. Maybe nobody will listen, but if even one person's mind may be opened, that could influence the lives of their patients.

Thanks guys!!

 

[bobbler]

Can I confirm what EBP stands for?


I understand the complexities of why not and can't tell whether this is a public or members-only thread but it might be useful to have more context

eg of which field and who approximately is being addressed?, along with what they might be currently referring to as their discussion point/thinking is a good idea ie are you trying to argue against or note issues with certain articles?. Just because there might already be 'job done' from an advocate for that area in another country or preferences for certain areas of literature or names/types of publication.

Is the issue that they are good intention looking for useful things they can do (so pointing to good advice) or not aware of drawbacks or issues of things they are enthusiastic about etc?

And am I correct in reading from this that a main focus here is pwme not getting misdiagnosed?

Understandably as many of us have personal experience or knowledge regarding ME, but not necessarily FND yet try and get ourselves up to speed with it then we've had to be careful/aware of how things read to those with FND too.

 

[ElephantNerd]

Sure! EBP stands for evidence based practice. Apologies for using a jargony abbreviation!! I will try to fix the title of the thread.

Also what a good point about joining existing advocacy efforts! I'm pretty sure there is no existing letter to tag along with in this specific case.

A well read magazine (not a peer reviewed journal, just a magazine) aimed at medical professionals in my field recently published an article summarizing current best practice treatment methods for patients with FND. There is a paywall to their article.

I’m not refuting their article or anything—just writing to the editors encouraging them to at least keep the misdiagnosis nuance in mind for future articles on the topic of FND. That way, clinicians can try to keep their eye out for if FND based strategies may not help certain patients in the longer term, and refer these patients for further testing instead.

They also stated point blank that there is no physical disease process in FND, and I want to gently encourage them to be a bit less definitive in stating that, since all we know is a physical process hasn’t yet been found. (If you think I should back off on that point, let me know! I don't want to overstep.)

I’m also secretly hoping the magazine may choose to write (responsibly) about MECFS and Long Covid in the future, since sometimes these patients are referred to providers in my field as well, so I’d like to enter the conversation equipped with sources to send them. I’m a little afraid that if they search for best practice for MECFS and long covid they may stumble onto CBT GET LP etc, and I’d like to steer them away from that stuff if I can.

Is this helpful context info?

 

[dave30th]

which field and who approximately is being addressed?,

Yes, that's what I'd like to know. What is the professional group or audience involved here? I've written a lot of posts about problems with FND prevalence, rule-in signs, etc.

 

[ElephantNerd]

I'm in allied health. Is this specific enough to be helpful? I don't feel too comfortable being more specific at the moment.

We don't diagnose FND or MECFS but we do treat patients who have both of these conditions. I think it's helpful for my colleagues to know to keep an eye out for when patients labeled with FND may actually need a different approach.

Not trying to dodge the question!! Thanks for understanding.

I will look for those threads! Thank you!

 

[Hutan]

Thanks for asking @ElephantNerd. It's a big subject.

1. MECFS is a physical disease separate from FND.

We don't have terribly good evidence that ME/CFS is a physical disease yet. FND is simply a name made for a collection of symptoms - what it covers depends on who you are talking to. It usually includes ME/CFS.

2. Some patients labeled as having FND are misdiagnosed and actually have MECFS, POTS, long COVID, or other complex chronic illnesses that involve brain fog, and it's important to recognize when FND based approaches are worsening the patient's health to refer for further testing, since FND is a common misdiagnosis for these other illnesses.

You can see that that argument doesn't get us very far if ME/CFS is seen as an FND by these people. And it is.

3. There is evidence of physical disease process in MECFS.

See 1.

4. Despite the plethora of peer reviewed articles promoting CBT as a viable treatment option for MECFS, these studies usually overlook long term outcomes of unmanaged MECFS.

Where we are on fairly solid ground is treatments (well, the lack of effective ones for FND). There is no good evidence that treatments based on an FND paradigm help people with ME/CFS, or indeed anyone. Long term outcomes are just one problem, there are many others. These includes a lack of objective outcomes, instead relying on patient reports of improvement after interventions that train people to ignore their symptoms. Even with this bias, reported benefits are small and are not sustained. Often there is no credible control treatment, and no accounting for natural recovery.

The other important point is the harm that an FND treatment can do - physical, yes, if people are pushed beyond what their bodies can do, with PEM and possibly longer term deterioration. But also, importantly, emotional harm. People despair when they are told that they can be well if they try, and then, when they try, they do not get well. They despair when they are told that they aren't really sick, when they know they are. People despair and cannot meet basic needs when family, friends and medical professionals do not support them, out of some misguided belief that support facilitates the false illness belief.

5. There is solid research debunking CBT as a viable treatment for MECFS.

Yes, there really is.

6. There are some (wish there was more) evidence based treatments for MECFS and POTS. I'm especially interested in pacing and OI treatment evidence, but others are welcome.

I don't think there are actually. Pacing is not a treatment, it is just management. It doesn't aim to improve the underlying disease - it just helps people get through the day. Evidence for OI interventions are pretty shaky. I'm interested in what treatments you think are supported by evidence.

7. There are rumblings that some researchers may be finding evidence of physical disease process in FND and/or functional seizures. Either way, we cannot rule out the possibility that FND has a physical disease process (pls correct my wording) that we haven't found yet, just as MS was misunderstood until someone finally found a way to see the damage to the myelin sheaths.

As mentioned above, FND is a vague term that covers presentations where the doctors have not (yet) identified a physical cause. It includes all sorts of things that probably don't have much connection - seizures, tics, gait problems, ME/CFS, fibromyalgia, IBS and other gastrointestinal issues... It is likely that most or all of these actually have some physical disease process, rather than being something that people can simply think away. I don't think there is strong evidence for any FND, although I guess it is possible that there are some cases. If an FND is found to involve a physical disease process, then it really is not an FND, although it has been interesting to watch some of the proponents tying themselves in knots as they try to accommodate supposed evidence of physical causes.

And this interesting piece I found on Long COVID vs FND: https://pmc.ncbi.nlm.nih.gov/articles/PMC11355889

The link is broken - here's the paper. Long COVID Is Not a Functional Neurologic Disorder
I know some people have found that paper useful for advocacy, but I think the paper is too muddled and actually is counterproductive. It assumes FND is only non-epileptic seizures and functional movement disorders, and so the argument is 'Look! LC and ME/CFS are nothing like those two things! The authors missed the fact that most FND proponents think ME/CFS is an FND. We have a thread on the paper here:
Long COVID Is Not a Functional Neurologic Disorder 2024 Davenport, Tyson et al that I think is worth reading.

Thank you for making the effort to combat misinformation, and get better information out.

 

[dave30th]

There is no good evidence that treatments based on an FND paradigm help people with ME/CFS, or indeed anyone.

Unrelated to ME/CFS, the two biggest treatment trials for FND have both had null results for their primary outcomes. In the CODES trial for functional seizures, the non-intervention group had a greater seizure reduction (non-statistically significant, however) than the intervention group. In last year's study of specialized physiotherapy for functional motor disorder, the primary outcome--physical function on the SF-36--also had null results. There seem to be no "evidence-based" treatments for any forms of FND.

 

[Sean]

4. Despite the plethora of peer reviewed articles promoting CBT as a viable treatment option for MECFS, these studies usually overlook long term outcomes of unmanaged MECFS.

Be careful using the term 'unmanaged', as that gets used to open the door to claims that 'managed (i.e. treated)' patients do better.

I take your point, just suggesting be careful about how you phrase it.

 

[Trish]

If you are going to specifically single out CBT as not an effective treatment for ME/CFS, it might be worth spelling out what the model of CBT specifically designed for ME/CFS involves. This includes telling people to ignore their symptoms and aims to overcome our alleged fear of exercise and as a consequence get back to normal activity levels. The PACE trial CBT manuals give more details.

It's based on the doctors' belief that we are misreading normal variations of sensations as symptoms of illness, as a result of which we are afraid to return to normal activities and have become deconditioned. The CBT aims to change those thoughts and get us exercising. It's incredibly harmful for anyone who gets PEM as it persuades us to distrust the body's signals to rest, and to push through, triggering PEM, and for some long term worsening. There is also the psychological effects of not being believed and failure to recover, with self blame.

This specific form of CBT is different from CBT for things like anxiety. It involves lying to patients about their beliefs and behaviour perpetuating their illness, and persuading them to distrust and ignore symptoms.

I think many therapists trained to do CBT for mental health issues will not see why CBT can be harmful for physical conditions, unless it is made clear that this is a different version of CBT based on the false assumption ME/CFS is psychosomatic.

Edit. I think you also need to explain PEM means exercise therapy is harmful for pwME.

 

[Jonathan Edwards]

Hi, @ElephantNerd,

Broadly I agree with @Hutan. If you peruse the forum you will see that this is an area mired in confusion of terms and lousy evidence.

All diseases are physical. All psychiatric disease is based on biophysical processes in the brain. Efforts to make a 'physical/mental' distinction just digs deeper into the confusion. Ironically, it is the BPS people who falsely divide the 'mind' from the 'body' like Descartes.

FND is a term deliberately used to mean at least two different things at once. Trying to argue with people about policy using the term is pretty much bound to get nowhere.

The real problem for people with ME/CFS has not been that physical and mental illnesses have been confused. It has been that the clinical psychology fraternity has been incompetent: introducing treatments based on unproven theories and appallingly bad trial methodology. When I was being interviewed by the NICE guideline committee I was asked whether my point about the incompetence and absence of evidence around CBT for ME/CFS applied generally to other conditions. At the time I had to say that I had not read widely enough to be sure but I strongly suspected so. Now I am quite sure that the problem is general. It is not a case of some conditions being more suited to some psychotherapies and some not - there is no sound basis for this sort of treatment for anything. It might work in some situations, but trying to argue on an evidence base gets nowhere because there isn't the evidence base.

We do have evidence for particular sorts of physical process being involved in ME/CFS - just recently - but pretty much all the so-called evidence talked about by advocacy groups is unreliable at best and mostly spurious. So I would forget literature on physical processes in ME/CFS.

I strongly suspect that now is not the best time to try to persuade people of anything in this context. I think over the coming year or so understanding of ME/CFS is going to change and the physical/mental debate will quietly slip away into history.

 

[Cinders66]

The Institute of medicine was commissioned by the CDC to do an assessmEnt of all evidence for ME/CFS pre 2015 and this review included many sceientists , it concluded “ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.” I think they also stated that the illness is not psychological . Their report might give you some of the evidence they felt supported this claim. This will probably be rejected by some on here but many outside accept this type of classification& the evidence. Afaic functional neurological disorder is too restrictive for an illness that’s been linked to abnormalities in many systems…immune , muscles and also there’s nothing to gain from the classification because the treatments for FND are seemingly rehabilitation and CBT which have been shown to have little use for many with m.e. I have very much the unwell/ flu feeling type of ME/CFS and apparently about 50% with an ME or CFS diagnosis do and I don’t think this Sits at all with a framing of pure neurological dysfunction. I don’t know of papers particularly, beyond that long covid is Not FND one, but if you can find research papers that examine m.e abnormalities outside of the nervous system it would refute FND. The FND Doctor Who was consulted on my case was very dismissive of causes such as mitochondria and just wanted to tackle things like "mindset" and rehab , which I think shows where they're coming from

I disagree with some of the statements above about not being conclusively a physical illness I think it's troubling patients to say that when in hospital, severe patients will be being denied appropriate Care on that basis. We can't scientifically point to the exact cause but there's in my opinion lots of accumulating evidence to support that claim, zero evidence to support the opposite claim i.e. psychological and patient themselves know their bodies, the symptoms they're presenting with are signs of physical illness not psychological distress et cetera & it has been a huge problem that the mental and physical has been conflated.

 

[Kitty]

1. MECFS is a physical disease separate from FND.

I'd say ME/CFS is a syndrome distinct from FND. (We don't know what the disease process is.)

2. Some patients labeled as having FND are misdiagnosed and actually have MECFS, POTS, long COVID, or other complex chronic illnesses that involve brain fog, and it's important to recognize when FND based approaches are worsening the patient's health to refer for further testing, since FND is a common misdiagnosis for these other illnesses.

The evidence of misdiagnosis is missing, but if people are saying that treatment or management approaches are making them worse, they should be believed.

That isn't about evidence, just good practice. Doctors already know that no treatment suits all patients, and that if a treatment doesn't produce improvements or makes symptoms worse, it should be discontinued.

I wouldn't mention referral for further tests, since there aren't any for most of the conditions you mention. Maybe referred back to GP for diagnostic reappraisal?

3. There is evidence of physical disease process in MECFS.

Not yet. We're getting closer, but there's no paper you could cite that has replicated findings.

Despite the plethora of peer reviewed articles promoting CBT as a viable treatment option for MECFS, these studies usually overlook long term outcomes of unmanaged MECFS.

Yes, but I echo the concerns about "unmanaged". All the management in ME/CFS is done by patients, not professionals. To manage it well they have to be in a position to do so, for instance not working if it's making them progressively worse, having enough income to pay their bills, and getting support if they're sole carers of children or vulnerable adults.

We need to be careful about not blaming patients for being unable to get into that position, especially as the one of the obstacles may be lack of support from medical professionals.

There is solid research debunking CBT as a viable treatment for MECFS.

Yep.

There are some (wish there was more) evidence based treatments for MECFS and POTS. I'm especially interested in pacing and OI treatment evidence, but others are welcome.

There aren't any treatments, only self management (most of which is pacing, as you say). I don't know of any evidence based treatment for OI, but it seems likely it's a symptom of whatever causes ME/CFS. If that's correct, it would probably go away if we found a treatment for the underlying problem.



We won't do ourselves any favours by claiming there's evidence when there isn't. It's probably easier for people to understand the message that there's an absence of evidence for anything, beyond the couple of trials showing CBT and GET approaches don't lead to improvement.

That sounds more negative than it actually is. It's saying that at this stage, the role of professionals in managing ME/CFS is very limited—which, as they have a history of mostly making people's illness worse, is not a bad thing.

Their role is diagnosis, advice on pacing, signposting newly ill people to good sources of info (this forum being one of the better ones), offering severely affected people home-based medical care, and supporting patients with things like applications for accommodations at work, mobility appliances, and home adaptations. There's little else they can do that the person's GP couldn't.

 

[Utsikt]

I have come to dislike the term EBP, because most people that use it have no idea about what actually constitutes evidence. It is shockingly bad. EBP has just moved the eminence from individuals to institutions, and it essentially assumes that the institutions or practitioners are good enough at assessing evidence.

That is not to say that we should be using unevidenced intervention.

See this thread as an example:
https://www.s4me.info/threads/evidence-based-medicine.43739/Evidence-based medicine | Science for ME

 

[Kiristar]

Below may be of interest

• Dr's with ME - Things Psychiatrists should know about ME.
• The Mayo Proceedings update
• "Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients" - https://pmc.ncbi.nlm.nih.gov/articles/PMC10819994/
• https://meassociation.org.uk/wp-content/uploads/ME-Association-Index-Published-MECFS-Research.pdf

I always found the genetic findings in families of interest and Luis Nacul has done some papers on disease course. It's just tricky when so much research is small scale. Hopefully Decode will identify some robust signals when it publishes.

 

[Adrian]

7. There are rumblings that some researchers may be finding evidence of physical disease process in FND and/or functional seizures. Either way, we cannot rule out the possibility that FND has a physical disease process (pls correct my wording) that we haven't found yet, just as MS was misunderstood until someone finally found a way to see the damage to the myelin sheaths.

You may want to look at @Carolyn Wilshire paper from a few years ago (PDF) Psychogenic explanations of physical illness: Time to examine the evidence

 

[Utsikt]

You may want to look at @Carolyn Wilshire paper from a few years ago (PDF) Psychogenic explanations of physical illness: Time to examine the evidence

Thread here with just a couple or comments: https://www.s4me.info/threads/psych...xamine-the-evidence-2015-wilshire-ward.23763/Psychogenic explanations of physical illness: Time to examine the evidence, 2015, Wilshire & Ward | Science for ME

 

[Hutan]

Below may be of interest

• Dr's with ME - Things Psychiatrists should know about ME.

This resource is discussed on the forum here:
News from Doctors with ME
The article has some good content - for example where it notes what the NICE Guideline recommends. That could be a good line for @ElephantNerd to take I think - it's reasonable to do an 'appeal to authority' if writing an article for a professional group e.g.
"Here is what you need to know about what the NICE guideline says about care of people with ME/CFS". It would be a relatively easy article to write.

Some of the Doctors with ME article is just opinion e.g. 'ME/CFS is not a mental illness'. To some extent, it's fair enough - the people on the BPS side are giving their opinion, and we, who know ourselves and our psychological histories, should be able to say 'No, I am not mentally ill'. But, as noted on the forum thread, statements like that probably aren't going to convince people. They will just assume that we lack insight into our condition. The argument that ME/CFS is not a mental illness could have been made much stronger - there are studies that have found that things like previous trauma and perfectionism are not risk factors for ME/CFS, and of course the evidence that psychological therapy does not cure the illness is important.

There is a strong argument for not addressing this argument directly at all. Protesting without evidence that 'ME/CFS is not a mental illness!' can be counter-productive. The NICE Guideline could be referenced with its recognition that people with ME/CFS have suffered from stigma. You still could say exercise and psychological therapies have been proven to be ineffective and that there are no effective treatments. The many teams around the word working hard on finding the underlying pathology of the illness could be mentioned, including the large genetics study, DecodeME - as that indicates that researchers are not assuming that thinking better and a bit of exercise is all that is needed to fix it..

 

[Hutan]

The Mayo Proceedings update

Here's the forum thread on this resource:
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2023, Grach et al

It being a Mayo publication may be useful in an appeal to authority, and will probably help convince some peope. It might be useful to quote something from it. But, as noted on the thread, it contains a lot of unevidenced treatment recommendations. I feel quite uncomfortable about the document being recommended to health professionals as a useful resource.

 

[Jonathan Edwards]

Some of the Doctors with ME article is just opinion e.g. 'ME/CFS is not a mental illness'. To some extent, it's fair enough - the people on the BPS side are giving their opinion, and we, who know ourselves and our psychological histories, should be able to say 'No, I am not mentally ill'. But, as noted on the forum thread, statements like that probably aren't going to convince people. They will just assume that we lack insight into our condition. The argument that ME/CFS is not a mental illness could have been made much stronger - there are studies that have found that things like previous trauma and perfectionism are not risk factors for ME/CFS, and of course the evidence that psychological therapy does not cure the illness is important.

I had another look at this and it really is pretty bad. It repeats the same old memes about a complex illness and gives no real evidence for its arguments. The sort of thing is just fodder for the BPS crowd - unfounded ideas by patients who do not understand the problem, even if they are also doctors.

The arguments are so easy for psychiatrists to counter. A person who is mentally ill does not necessarily know they are. When my wife had her psychotic paranoid illness she had no idea she was mentally ill. It was everyone else who was evil. The fact that trauma and perfectionism are not convincingly linked is not an argument because they aren't linked to most mental illness. And the evidence for psychological therapy curing anything is pretty thin all round. For delusional illness almost by definition it doesn't work.

The argument for ME/CFS not being a psychosomatic illness is maybe stronger - that there is no good evidence that it is and CBT doesn't work. But even there, there is no proof.

Unfortunately, the one thing we do have quite good evidence for is irrational beliefs about the illness - the belief that all these 9000+ papers on non-replicable biomedical findings somehow prove something about it.

We need to move on. Fortunately, I think we will be able to over the coming year. We already have reasonably convincing evidence for genetic causal factors from the Zhang paper.

 

[ElephantNerd]

Oh I KNEW I was coming to the right place asking for help here!!

I'm a bit brain fogged and flattened at the moment, so I don't have the energy to process everything you've said well or to revise my letter/outline yet. Keep these excellent comments coming; I'm learning so much!!!! When I am a bit past my current flare I'll get back to work on the letter.

I hear the argument for waiting for Decode me and I'm open to that suggestion too! Might be the better move. It's just hard to leave things be when I know my colleagues are reading the FND article and it's impacting patients' lives so profoundly every day. I wonder if even a small "maybe we don't know as much as it may seem we do" type letter to the editor might be an effective stop gap, while pointing them to look for the upcoming Decodeme results. I'll have to think on that.

In the meantime, I already have two followup questions.

1. What about POTS? Lots of people with ME are also diagnosed with POTS. It's my understanding that pwME that also have POTS don't have POTS exactly but they have OI stuff that looks like POTS? I've found the POTS diagnosis helpful in my own case, because most doctors have taken POTS seriously. How do y'all recommend I talk about Pots in the letter?

2. I have a friend with Pots who does NOT meet the diagnostic criteria for ME, but she does have FND type rule-in symptoms (remember I'm brain fogged so I can't figure out how to word this right.) She has a neurogenic sounding stutter (onset with illness; she didn't stutter before), and she has apraxia of speech, and some pain stuff, gait stuff, etc. When I brought up concerns about her FND diagnosis, she said FND treatments are really helping her and that the understanding of FND has moved beyond the conversion disorder talk. She said thinking about her symptoms really does worsen them, and that the CBT to help her focus on other things really does improve her symptoms, BUT she also knows they are there and manages them without focusing on them, and that docs aren't telling her to push through at all. Even if it isn't "psychological," I wonder about you guys' thoughts about this.

Thank you all so much!! Keep these comments coming. I am learning so much!! I know I'll learn more when I have more brain cells.

Advocating for pwME while having ME is really exhausting, even just writing a letter to the editor of a magazine, and just knowing you all are helping me figure things out is helping me feel much more confident and less nervous/angry/alone.

Go team!! Thanks so much for the help!! Keep these excellent thoughts coming!!