Are People ME/CFS Now Being Diagnosed With FND Instead?

[PaulUK]

I have been reading posts on here and I can't help but think that some people are being a diagnosis of FND when they may have ME/CFS ( Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) . The problem is many UK neurologist don't recognise ME/CFS as a organic illness and are prone to think it's a functional illness. This is despite a lot of evidence that shows biological problems in ME/CFS. There are over 5,000 papers that show biological changes in people with ME/CFS including immune problems, mitochondrial dysfunction, muscle dysfunction ( Prof Julia Newton in Newcastle has shown muscle in people with ME/CFS produce 20x more lactic acid than normal controls) and measurable cognitive problems. There are many more things that have been found to abnormal, this is just a few of them. There are different severities of ME/CFS from those who can still work to those at the severe end who are bed bound. About 25% of patients are severely affected.

In some ways it doesn't matter as ME/CFS isn't curable. The only treatment available is CBT and GET (Graded Exercise Therapy). The recent much trumpeted PACE trials claimed to show CBT as being effective, however no one recovered back to normal. All the measurements that showed improvement were subjective. The only objective measure, the 6 minute walk test show that those they claimed to have cured were still very disabled. It also ignores the fact that many people with ME/CFS have been made worse by CBT and GET! Some of gone from being able to work before the treatments to being bed bound afterwards. The PACE trial is reference by doctors treating FND, the results weren't as good as the psychiatrist who did the trial have tried to make out. So the supposed treatment for ME/CFS is the same for FND.

However it does matter for a number of reasons. ME/CFS is recognised by the NHS and the British government as a illness. It has it's own set of NICE Guidelines which govern the way in which patients should be treated. The NICE Guidelines aren't very good but they are a start. Having a diagnosis of ME/CFS instead of FND may make a difference when claiming benefits. Some areas of the UK have specialist ME/CFS services. These vary in how good they are as some still subscribe to a psychiatric model. There is usually a long waiting list to get seen at by a specialist ME/CFS service.

If you live in America it could make all the difference to your treatment. ME/CFS research beed has recently been reviewed for the IOM . They have recognised that ME/CFS is a biomedical illness and have recommended another name change to reflect it's core symptoms rather than majoring on fatigue. The recognition could mean claims for insurance payments for treatments becoming easier.

medscape.com/viewarticle/83...

Probably the most important things is a lot of research is being done into ME/CFS. There have been a couple of research projects in the last couple of years that have shown inflammation in the brains of people with ME/CFS, they used new scanning techniques to show this. The inflammation was found in parts of the brain the correspond to patient symptoms. solvecfs.org/research-diges... These are only preliminary results, but it may explain the fluctuation in symptoms. You can find a whole list of biomedical problems found in ME/CFS with links to the research here voicesfromtheshadowsfilm.co...

There may not be any cures or specific diagnostic test for ME/CFS at the moment, but research is progressing and a diagnostic test and even a cure may be just around the corner. If your diagnosis is wrong, you could miss out.

ME/CFS can cause a lot of neuro-symptoms that can be seen as being functional by some doctors. You can read a very comprehensive list of possible symptoms here name-us.org/MECFSExplainPag... .

So what is the criteria for ME/CFS? There are a number of criteria that have been used over the years. The latest have been produced by the IOM. They have also suggested to Systemic Exertion Intolerance Disease (SEID). You should be aware that these are core symptoms, people with ME/CFS experience a number of other symptoms. See the link above. This is the IOM's criteria:

1. a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest;

2. postexertional malaise (often described by patients as a "crash" or "collapse" after even minor physical or mental exertion);

3. unrefreshing sleep; and

4. cognitive impairment and/or orthostatic intolerance (ill if upright too long).

Both frequency and severity should be evaluated for postexertional malaise, unrefreshed sleep, and cognitive impairment, and the diagnosis made if the patient has these symptoms at least half the time with moderate, substantial, or severe intensity. Unlike some previous definitions, this is not a diagnosis of exclusion and can be applied to patients who also have other potentially fatiguing conditions.

If you have the above core symptoms I would suggest, firstly you get informed about ME/CFS, and secondly you may want to ask for diagnosis to be reconsidered. All of this may not apply to everyone on here but from what I've read, it may apply to some.

[angelite]

Paul, I love your post. I have often wondered if FND was being used as the new ME/CFS in some cases.

I am similarly suspicious of a term that seems to be open to interpretation-professionals seem unable to agree if it's physiological or psychological which definately affects what,if any,treatment options you are offered.It is often twinned with conversion disorder.

Finally, I believe it is sometimes being abused as an easy solution to difficult to diagnose cases or where protocol/UK guideline tests have not been followed through mistakes or budget constraint.

I feel that a lot of genuine neurological conditions and Aquired Brain Injuries are being quietly brushed aside under this label.

My own case followed all the red flag,textbook symptoms of Encephalitis.Stiff neck,movement disorder,autonomic dysfunction etc. but I was thrown out to psychology after a clear scan 2 days into symptoms which I have since learned is not uncommon,especially in early stages.No EEG or lumbar puncture performed.

Elevated white cells for five months and lymph nodes swollen for two months during acute symptoms apparently do not count.Back to work at 6 months on very reduced hours with residual spasticity,co contraction,flexor spasm symptoms,short term memory and multi task deficiencies,tinnitus and fatigue.Positive Romberg test and reflexes.

Originally told I had suspected Encephalitis by neuro at 5 months,ultimately put down as FND by the same neuro a year later.He offered meds which I declined due to side effects . I asked for physio instead -he shook his head..He refused to answer any of my questions,simply ignored me.All very odd.Still the same symptoms 2 1/2 years on.Psychology do not believe I have any mental health issues and signed me off.

I understood that an FND diagnosis was meant to be made on the existence of positive functional features,after all other possible tests have been exhausted.

It does not seem to work that way for many of us : (

Thanks for your informative post-I hope it gives others a fresh perspective.Angela x

[PaulUK in reply to angelite]

Hi Angela

If your illness started after an infection you should look into ME/CFS as it usually starts after an infection. You are less likely to be tested properly for neurological diseases if you're female, because they reckon women are more likely to have functional illness. I've had loads of tests, probably because I'm male! After all you women have a womb to wander!

Doctors haven't learnt from past mistakes. Diseases like diabetes, Parkinson's disease, stomach ulcers, dystonia and multiple sclerosis have all been considered to be functional or hysterical at some point. MS was called fakers paralysis until scans that showed the problem were invented. Some psychiatrists used to think Parkinson's disease was caused by repressed desire to masturbate!

The assumption that doctors know everything about the human body is unfounded. When it comes to the brain there is still a lot to learn. They cannot take biopsies of the brain so they still don't know what may be going wrong on a cellular level. There are only a few neurotransmitters they can measure. How often has the CNS of functional patients been studied post mortem? I know of at least three patients who died after being ill with ME/CFS for many years. They had there CNS looked at post mortem. The neurologist who carried out the investigation foun inflammation of the CNS that was only visible under the microscope.

Some neurologist claim that misdiagnosis of functional patients is rare, however go on any forum for people with neurological diseases and you will find person after person who was originally told their illness was functional, psychogenic or hysterical. Many take years to get the right diagnosis. Add to that, a number of illnesses are known to be hard to diagnose, have strange symptoms and are notorious for false negative tests. The problem is doctors are now being advised by neurologist and psychiatrists not to retest as they believe it ingrains false illness beliefs and makes functional symptoms worse.

I'm sure there are financial incentives for not investigating in times when money saving is high on the agenda. Added to this, it's common knowledge that a number of psychiatrists who are promoting FND have strong links with the medical insurance industry.

Paul

[angelite in reply to PaulUK]

Paul, you are a font of wisdom , also much hilarity ! It is good to see that your sense of humour,like mine,is still intact : ))

I agree completely with your views-sexism is alive and well in the world of Neurology.The only use I would have for Freud's work is as kindling for a fire !

I too have met many people with various ailments that were originally told it was 'all in their head'.Two of which, both ladies , were on my hospital ward- one was diagnosed with a brain tumour,previously told she had stress headaches from her Grandmother's recent passing,another had ended up with part of her bowel removed and was tube fed as her stomach no longer emptied,originally told IBS from stress.Some very dismissive attitudes in the medical world.Delays in diagnosis can cause further damage/worse prognosis. Seems many of us have to fight to be taken seriously these days.

My symptoms do not fluctuate- only more pronounced with fatigue as you would expect.I do feel that I have had an inflammatory brain event of some kind and the resulting damage will take time to reroute,if indeed it can complete the job.

I am settled and adapted to the 'new me' so no longer searching for answers.I am satisfied by my own research that I am dealing with the fall out of Encephalitis and possibly in for the long haul.That said, it would have been nice to have had all the guideline tests -they may have given me a definite diagnosis and better treatment/aftercare.

Thanks for your reply, always nice to meet a likeminded sceptic ! : ))

Angela x

[PaulUK in reply to angelite]

I have to laugh about it Angela or I'd cry. I've had this so long now that I just accept I have it. I've had enough tests done to at least be sure I don't have a nasty progressive neurological disease that will eventually kill me. I know when I start getting involuntary movements I'm not going to have a seizure. I'm fairly unperturbed by my illness these days.

I do get remission every so often, usually only lasting a day or a few days, although I'm just coming to the end of one that's lasted 9 weeks. I went from struggling to walk 20 metres to walking 4 miles a day. My cognition was vastly improved and my involuntary movements virtually went. I had a hint that things weren't completely normal, but was hopeful I was getting better. I hoped I'd started to hope I'd be able to work again, I try not to get my hopes up but it's hard not to. But over the last couple of weeks I've had times where my gait has gone and over symptoms have come back. The last few days I've got worse and I'm not far off being as I was before the remission. I'm still hoping the remission has completely ended though.

It's hard to go back to being able to do little again. I don't get these remissions often, maybe once a year. Generally my symptoms stay much the same. They get worse with activity, which is now recognised as being a core feature of ME/CFS. I've found the good day bad day idea to be a fallacy, what happens with most people with ME/CFS, including me, is they get so fed up with doing so little that they push themselves past their limits and crash! It's more push crash than boom bust.

[Newly]

I totally agree! and I'm so glad to see more sceptic's like me .. What annoys me with FND is this .. According to these neurologist It covers every possible symptom known to the medical world, which seems a bit too convenient doesn't it .. Part of the condition is not accepting this as a diagnosis .. again that's convenient to the medical profession and gives them free rein to ignore you and offer no more expensive tests and if they are so sure of FMD then where is the treatment? Well there isn't one apart from physio or pyschology and again this doesn't benefit many people, so why are they not wondering why the success rate of these therapys is so low for how many ppl they diagnoise?

I believe that too many people are given this as a diagnosis just to clear too many people in the neurology dept now and to many people .. Seems more than the 5% they say .. are actually mis-diagnosed! Some leading Professors in the medical field are actually saying now that a FMD diagnosis is harmful in delaying people in getting the right care & treatment they need and things like b12 deficiency , mitrochrondrial disease, myastenia gravis as well as ME are all too easily being diagnosised as FMD because the neurologist is not a specialist in that area.

I for one was given a FMD diagnosis after the so called FMD specialist ignored me telling him that I have nerve damage in one foot so my strange gait has been like that for over 12yrs (only had Neuro problems for 2 yrs) and I've never had weakness in my legs .. But guess what! I had a positive hoovers sign so as he said .. I defînitely have FMD! Lol ..I would of been more worried if I didn't! He ignored my MRI scans that aren't clear and ignored speech therapy & neuropyschology reports as well as my blood tests that aren't normal and actually I would say that he was trying to convince himself more than me of the diagnosis and seemed very comfortable to ignore other health professionals as well .. Oh and he didn't seem impressed that I won't accept his diagnosis because I said .. It's like me telling you that I'm tea total, you ignore that info because you want to and offer to send me to an AA meeting as the first step to recovery is admitting I have a drink problem! When I know I don't .. So It just isn't going to happen.

I hope that people actually continue to fight the 'system' as no Dr knows them better than they know themselves! and as my neuropyschologist told me months ago .. beware of neurologists writing any sort of 'functional' term on my notes, only a Neuropyschologist can properly diagnoise functional and neurologists can't! but they are doing and she's frustrated by it as it's not there area of specialism.

Sorry for wittering & ranting on, but heard so much about functional before I even got diagnosised with it .. Or should I say mis-diagnosed? or should that be I'm not accepting my diagnosis! lol .. Either way! Keep fighting is my motto

[Paula1677]

In answer to your post YES! I was diagnosed with fibromyalgia in 2009. My symptoms got worse in August 2017, I got referred to neurology and they thought I had MS, but my MRI scan came back normal. MRI is the only test he performed other than a very brief examination. When I got the results of the MRI, he said I have fibromyalgia, ME/CFS which are all Functional Neurological Disorders. Anyway got a copy of the letter he sent my GP this morning in which he states my diagnosis is FND and he is putting me on noritriptyline, referring me to physio and CBT. But no help from any ME/CFS services.

[Denise1968]

Very interesting read as I have what I think is me/cfs I fit all the criteria for it and was loosely given that diagnosis but since my vaccine reaction I have a few additional issues so Ive been labelled with FND. Ms was ruled out as I had trouble standing and with co ordination and Mobility issues during a bad crash in 2022