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.
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.