Nasty messages from 'friends' after sharing a condition relating to Mental Health Day

[putheronys]

Yesterday I shared an image on FaceBook about ending the stigma towards mental health, the particular image 'poster' listed quite a few illnesses, depression, BPD, Bipolar.... and it also happened to mention fibromyalgia.

I have two fellow friends that suffer with this condition and both have messaged me this morning, one saying sharing that is beyond the pale, the other suggesting I deleted what I've shared since it makes people think the condition is all in the head.

The thing about the condition is it is somewhat in the head, as it's generally believed by specialist that it's how the brain interprets pain signals, again, a mental impairment really (sorry for my awful wording if that's how it seems).

Anxiety is a mental illness but also has physical side effects, such as breathlessness and fatigue, etc.

AIBU to have shared that post? I'm a bit baffled that they'd attack me with way. Am I really in the wrong here?

@Justonedayatatime11
Do you mean that people consider it a mental health issue by 'all in your head' and not real?

dreichsky yes. My own GP said there were a surprising number of people who use the diagnosis for 'secondary benefits' (his words not mine). Because there is no proven test to categorically state that fibromyalgia is a genuine illness, I've found a lot of people consider it to be a 'made up' diagnosis, or an excuse for laziness. Again, not my words. I am struggling to come to terms with having this because so many people seem to believe it's not 'real'.

I can see where your friends are coming from here. Glad you took the post down. Hope you also apologised to your friends for your ignorance too!

Well if anything I feel a bit more educated about fibromyalgia and me by this thread. Different possible causes and treatments. I hope that research can shed more light on them in the future.

If people were to change their whole view on psychogenic illnesses there wouldn't be the stigma attached to the 'its in your head' issue. If someone has clinical depression we don't tell them to cheer up! Or if a paranoid schizophrenic is hearing voices we don't tell say 'they're not real so just ignore them'. The same should happen with fibromyalgia. We believe you're in pain & the best treatment is psychological and physical therapy

@CuriouslyCuriously Thanks. DD(18) has had 18 months of CBT and ACT to learn to cope with ME. It was very useful as it helped her to not get depressed and try to live her best life with what meagre opportunities she currently has. But sadly it had no impact on her metabolic energy production and didn't give her more energy than she started with, much like it wouldn't shrink a cancerous tumour. But it had its place and at least no one can say she only makes 2 hours' energy a day because she's depressed or because she's just not putting 100% into it.

@putheronys But that's the thing - There is no evidence. One of the contributing factors for it being so hard to claim PIP for is due to no real medical evidence other than the effects

The effects are objectively measurable (for ME at least) and therefore count as evidence of disablement. What science doesn't yet know is the cause and/or how to reverse the effects.

@putheronys can we see the original post?

@putheronys PIP is based on how your condition affects your life, not on your diagnosis. I am disabled; my mobility is extremely compromised. The fact that is it from fibromyalgia is immaterial - I have no trouble whatsoever claiming the mobility element of PIP 🤷‍♀️.

The thing about the condition is it is somewhat in the head, as it's generally believed by specialist that it's how the brain interprets pain signals

Pain is pain - it’s always signals to the brain whether ‘misinterpreted’ or not, that doesn’t change how real it is. As a pp said there’s a difference between neurological and mental health conditions.
You’re friends definitely have a point and you sound very ignorant and pretty silly too.

You should delete the post and apologise.

People have recovered from FNDs eg FMS, IBS, CFS/ME. But those people accepted that it's a FND. The whole reason people aren't recovering from this dx is because they refuse to believe it has no organic cause

Firstly, I believe many conditions labelled as mental health such as bpd, clinic depression will prove to have an organic basis, indeed I believe research studies are pointing that way already. I am unable to comment on fibro at length as it’s an area I am not so well versed in. I believe medical research is showing various possible pathologies, including small fibre neuropathy. It can’t be asserted it has no organic cause. I am glad you have taken your post down OP.

ME is an area I am well versed in. ME is not an functional neurological disorder. Yet sadly there are still health professionals and clinics it spreading this false info. Treatments for ME have been in the UK CBT to change alleged false beliefs and Graded exercise. These treatments do not work for people with ME and in the case of graded exercise can make patients functioning worse long term. Studies have shown energy production in the aerobic pathway ME is dysfunctional. The US CDC have dropped recommending GET and CBT for ME. It is hoped with the new guideline under review in NICE for ME it will also be dropped in the UK. They need to be.

To be honest I think FND as a concept is weak and really is a new term for what was once called conversion disorder, another dubious psych based theory. Treatments for FND also usually focus around psych therapy and graded exercise. As said, these have shown to not work for pwme , the large PACE trial that investigated graded exercise and CBT aimed at challenging the patient’s false belief they had an organic illness (not the type of CBT to help a person adapt and cope with a life changing illness) was shown on reanalysis to not work. There is a call by a growing number of researchers to retract the PACE paper. It’s heinous that ME is now being put in the FND category and ME patients continue to be at risk at being given treatments which do not work and can harm.

The HCP who wrote the words I quoted at the top of this post would do well to read this paper in the well respected JAMA journal published in July 2019 titled ‘Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome’ where Professor Komoroff from Harvard University covers the various body systems that have shown abnormalities. He shares:

“Over the past 35 years, thousands of studies from laboratories in many countries have documented underlying biological abnormalities involving many organ systems in patients with ME/CFS, compared with healthy controls: in short, there is something wrong. Moreover, most of the abnormalities are not detected by standard laboratory tests.”

jamanetwork.com/journals/jama/article-abstract/2737854. If you don’t have access the ME Association published his piece in JAMA on their website. www.meassociation.org.uk/2019/07/advances-in-understanding-the-pathophysiology-of-me-cfs-08-july-2019/

I also would suggest looking at a series of 24 papers on ME/CFS called “Advances in ME/CFS Research and Clinical Care,” published in 2018-2019 in the Open Access Frontiers journal.

www.frontiersin.org/research-topics/7718/advances-in-mecfs-research-and-clinical-care#articles

I also attach a screenshot of a piece written by an Australian research scientist that lists seven evidence based findings that can illustrate that ME is a multi organic, systemic and severely debilitating illness.

Sorry to hijack this thread and move it on to ME but as a person severely affected with ME for many years when I see a HCP making claims that ME has no organic basis and a person with it could get better if they just accepted it wasn’t organic I cannot leave that incorrect statement unchallenged.

Thank you @birdandroses for putting across what I wanted to say. Brain fog is not allowing me to post coherently today and I completely agree with you.

I have ME and have not come across another illness where patients are treated so badly. It is shocking.

@XXYY376 I should have tagged you in my response to your assertions in my post above. As I did not, I am doing it now. If you work in a place that promotes the concept of FND and incorrectly claim that ME is a FND disorder, I highly doubt my post above will make you change your mind overnight. I just ask you to consider reading the literature out there that robustly challenges this view. Please be aware the international medical literature is steadily showing ME is not a FND disorder.

birds and blue

Has anything ‘worked’ for you?

I have fibro and I'd find that belittling of the condition

This and other similar posts highlight why mental health awareness and destigmatisation is so important. Too many people think that their conditions are more serious or more real than mental illnesses. Or they think mental illness is something to be ashamed of.

Maybe the eventual end result of mental health campaigning is that we won't need to categorise into mental health and physical health at all. We'll all just have (or not have) 'health' and will suffer from 'illnesses' - no categorisation needed.

There's so much overlap between the mental and the physical and so many people suffer from both types of condition that it seems needless to rank and divide like we go.

Sticking with fibromyalgia as the example - I don't know anyone with fibro who doesn't also have significant mental health problems. It also seems that almost everyone who has posted on this thread with fibro has a mental illness as well. So who's to say where the chicken and egg, cause and effect arguments would resolve and which side of physical and mental different symptoms and diagnoses would come down on. Isn't it sufficient that each of those people are ill and will need a variety of treatments for different illnesses and symptoms to feel well?

@blueswavewcrashing, thank you. I am sorry you have ME too. There has been a systemic injustice lobbied at people with ME these last 30 years or so by much of the medical profession. The UK medical authorities chose in the late 1980’s to give the centre ground to a group of psychs who hijacked ME and have pushed for decades that ME is predominantly psych based. They simply ignored the biomedical research showing biological abnormalities. The biological evidence and patient testimony is too large now to ignore. However, the psychs and their proponents in other medical disciplines will not give ground easily as seen in now trying to portray ME as a functional neurological disorder despite biomedical evidence showing there is no basis for this claim.

In the meantime patients ME continue to be gaslighted and told there is nothing organically wrong with them and encouraged to do treatments which actively harm them. Eventually the incorrect model of ME will be fully accepted as incorrect but we are not there yet. All illness is difficult but having the illness portrayed wrongly by the medical profession is tough. Both MS and Parkinsons, TB too were wrongly portrayed as not organic diseases until testing was developed that identified the pathology.

Too many people think that their conditions are more serious or more real than mental illnesses. Or they think mental illness is something to be ashamed of.

I think this is becoming less and less common, luckily. I've had anxiety in the past. It's now well managed with medication but at the time I was mentally very ill with it.. I did have physical symptoms caused by it but the root issue was a mental health problem.

Now I'm suffering from ME I am totally sure that it is a physical illness and very different from anxiety and depression. Some symptoms affect my thinking eg my cognitive function is impaired, lack of concentration and poor problem solving, but also many physical symptoms eg pain, numbness in limbs, headaches, sore joints, unrefreshing sleep, lack of appetite, poor temperature control etc etc.

You can't think yourself better from a mental illness or a physical one.

GPS don't know who to refer you to if you have ME as it's a multi system disease. Rheumatology, endocrinology, neurology. I was put on a fatigue management programme--the booklet referenced the pace trial 🙄 I'm now seeing a private neurologist to try to shed more light on it but I don't know if it will help at all.

@manicinsomniac, I know you are basing your comment in reference to fibromyalgia, but as someone with ME I have often seen the accusation that when people with ME say they do not have a mental health condition they are belittling mental health conditions. I just want to make it clear this is not what a person with ME is saying when they state their illness is physical and I imagine it it could be the same for people with fibro.

As said, I think in many cases science will eventually show illnesses classified as mental health illnesses will actually be due to organic dysfunction in the brain, as indeed studies are starting to point to. However, whatever the case, I know mental health conditions can be severely disabling and when I say my ME is not a mental health condition this is not me trying to suggest my illness is more serious, worthy of respect. . There is no hierarchy between physical and mental illness. They are both difficult.

As someone with ME, however, mental health treatments for ME do not work and often make the patient worse. Patients with ME just want their reality acknowledged so they are not made to do things that make them worse and also hope when more of the medical funding bodies accept mental health treatments do not work (I appreciate they don’t always for people with mental health conditions either) they may finally start giving more funding for biomedical research.

My understanding fibro can be hard to live with (I have a lot of nerve and muscle pain with my ME so can relate) and I have seen some fibro patients share mental health therapies are not treating their fibro symptoms. I imagine like I do with ME if many are finding mental health treatments are not effective and there are studies pointing to pathology, they want funding to study and develop effective treatments that will improve their quality of life further.

I find it sweeping statement by you to say you don’t know anyone with fibro who doesn't also have significant mental health problems. You have not met everyone with fibro. People of course can also have both. Also chronic pain is bound to affect mental health as well.

YABU. Massively

Not what you asked but this crap about sharing wanky posts on mental health awareness week pisses me off. My husband has serious mental health issues and has been suicidal and I cringe so badly and get annoyed with this hashtag healthcare crap. It doesn't raise awareness does it really?

Thanks to the people above with ME fighting back on the ridiculous comment that the reason I've not recovered from ME is because I refuse to believe it has no organic cause. I've had this condition over 20 years and I have fought it to be able to work full time but this is at a sacrifice to everything else. I have tried everything, including antidepressants and nothing helps with the physical symptoms that I get (surprisingly my mental health is actually quite robust!).

I've been told over the years to stop being lazy and go for a run etc so many times. Don't you think I'd bloody do it if I could?

@RufusthebewiIderedreindeer, I am afraid for me no. I have had ME for 21 years, first six years moderate, the last 15 years various levels of severe, including 16 months of very severe. The last 6 years I have been bedridden 24/7. All I can do is try to not exert beyond my mental and physical energy envelope which being severe is v limited.

As research funding has been so limited for ME, there are few epidemiological studies. The few looking at prognosis suggest if full recovery is going to happen it’s most likely to happen in the first few years of treatment, estimates suggest only around 5% make full report recoveries. Many find they may make some improvements but not to full recovery and the illness can fluctuate, periods where level of functioning can be a bit better and then periods where functioning can be a bit worse. They estimate 25% become severe and many of these 25% remain severe long term. Those who get ME as a teenager and are given the correct advice to rest and pace at the start and not fo graded exercise have the highest chance of making full recoveries.

Sorry I am reaching my limit typing tonight so can’t wrute much more.

@Bluewavescrashing, there have been quite a few papers out now showing the many methodological flaws in the PACE trial. The trial was non blinded, used subjective outcomes and made post hoc changes that made the results appear better than they were. Looking up Dr David Tuller who discusses this in detail on the wsvirology blog.

Sorry to hear that you've got the condition severely birdsandroses. This is my absolute fear. I got the condition in my late teens, but because I knew other people with it, I recognised it (even if the doctors said I was depressed...) and rested as much as I could. As a result mine is mild to medium, but the severe relapses I get every few months scare me, as I worry I won't get better again.

I really hope yours does recover with the appropriate rest.

@MonicaGB, I hear you! Sorry I can’t type more tonight