Mental Health and ME

There was a recent and very concerning post by a member who has displayed extreme suicidal ideation. I feel worried about her, and it got me thinking - because people with ME/CFS are often maligned by GPs and the public, and because of the possible neurological impacts of the illness (I've had severe depression when having a 'crash'), there is a giant mental health burden associated with the disease.

The issue is that people with mental health issues, much like those with ME are routinely dismissed by health authorities. Often in my country people have to beg to get hospitalised, and there is very little support. And what support there is can be difficult to find.

I hope the lady in question is ok. I have a background in mental health, and wonder if there is some way this forum could assist with information about mental health services? I just have to state here I categorically do not believe ME is a mental illness. However, the result of living with a chronic illness and all that entails can lead to quite severe depression.

Just some thoughts.


Sadly due to the psych. biased that has been put onto CFS/ME... much of the psych help out there is competely unsuitable due to the myths many of them believe. Ive been made out to be a lyer by some psychriastrists when i tell them what is going on for me. The not being believed, makes us then feel even worst and even more depresssed. I even got accused of self harming myself to put myself in hospital.. so stupid as i really hate hospitals so much.

Im meant to go and see another psychriastrist due to emotional breakdowns which has gotten me into trouble with the law (im facing that i could go to jail now, due to my emotional dysregulation issues Ive developed.... I actually think I may be suffering from PTSD from how badly ive been treated with the CFS/ME)..

thing is im now terrified to see another psychriastrist due to how several Ive been to and who completely dismissed the seriousness of my issues and told me I just need to control myself better (and then they refuse to see me again or do anything for me). I cant handle the thought of yet another think Im lying about what Im experiencing. The lack of support has left me as depressed as I was when I was at my worst with CFS/ME.

Im about to break a court order to go to one... as i just cant face being treated as im lying about my issues again.. when im suffering so much. I cant stand the thought of putting myself throu being ridiculed or whatever.. by someone who has no clue what is going on with me. (what also bothered me is it was just going to be an assessment for the court.. so yet another one who would not offer me no treatment, see me a moment and judge me on whatever biased that person has towards certain things.. and then never see me again to try to help).

I cant face this issue with dealing with people who are supposed to be called medical experts. who truely dont have any idea at all what im going throu. I know im going to get into an arguement with my boyfriend next week?? when he tries to get me to go to the court ordered psychriastrist assessment... as i just cant handle the thought of going and bad treatment.. and of being judged by one who is no expert in what im dealing with. Im darned if I go and darned if I dont.. so why put myself throu it. Just thinking about it makes me feel terribly ill.

I must be depressed for I feel no hope at all.. or maybe Im just sensing what is fact for me.. no one medically understands so Im basically doomed. i need to block out my thoughts over all this.. as it just makes me cry.
Do you have any more specific ideas re how this forum might be able to assist with info, or are you asking us for the ideas? I mean, are you looking for a way to refer people to help, are you looking for a way to just spread more awareness and education re this, are you looking for some form of more immediate assistance for people who are suicidal, or something else entirely?

I have an MA in counseling but cannot work because I am too sick, but I definitely have an interest in helping people who are struggling with this stuff (& honestly I have struggled with illness-related depression and hopelessness myself)......I agree that more needs to be done & that it can be esp tough when there is so much backlash from people like Wessely and Reeves, but I am not entirely sure what the answer is, becasue the typical ways of handling depression and suicidal ideation are not only not helpful for people with ME, but they can actually be quite harmful (& I am not actually referring to GET and CBT at the moment - we all know how bad those can be for us).

Traditional methods for dealing with these issues involve various ways of coping that many of us are too sick to do (socializing more, exercising, finding hobbies that we can get involved in, etc, etc).....then there are support grps for depression that may be too hard to get to and even if we can go, we probably won't be able to really relate to those who are there for other reasons (nor they to us) becasue the underlying issues are quite different and again the suggested ways of coping are not possible for many of us (& often many people in those grps think that ME/CFS is really depression anyway, which obviously is not true and does not help)

....and then there is hospitalization which again relies on support grp and coping skills types of ways of dealing with depression, may have a bunch of professionals who also believe that ME/CFS is just depression, will cost money that most of us cannot afford, and will present physical difficulties (less rest, less sleep, possible MCS problems, possible meds that many of use react badly to, etc)....and being in the hospital could also actually increase stress because if there are things on our to do lists that we are struggling to get done as is, being in the hospital will just set us even further back on getting those things done, esp if the hospitalization precipitates a crash

I am not sure who you are talking about re this forum and suicidal ideation, but I , too really hope that she is ok and can find some help (despite my previous comments, I do believe that it can be possible to get help if one can find a good, ME/CFS friendly counselor)
Im sorry I dont know where you live, but cant you go to the Duty Officer at the courts and ask to speak with a social worker there, Im sure they could assist you. I work in the courts from time to time and there are people appointed to answer these questions.
Hi heart goes out to you, just spent all of this year with depression and through ignorance and judgement many months of feeling so desperate and suicidal as a result. Today have spent time with a lovely, clinical pscholoigist who is also an expert in M.E. etc. and have been reassured it's all part and parcel of this horrible condition. I have accepted counselling to help illeviate all the hurt due to ignorance (the cruelest part of this illness!!!) not going into details as still too painful but the pain from the depression and ignorance was worse than any physical symtoms endured with this over the years. Do you have any M.E. support groups near by?? After 12 years coping alone have just joined and helped so much. It sounds like you just need a little support, love and kindness and most of all for someone to actually listen to what you are telling them. The opposite is very harmful and hurtful. Please take care...had to join when I read your blog..wish I could help. Oh and today have been reassured that I am not mentally ill but have a real physical chronic illness...very hard being sent to Coventry being told am mentally ill and need help. I can't do anything to change those around me learnt that now just need to come to terms with it. Lots of love x

In theory, having some support contacts & phone numbers on PR is a great idea, but the members here are from all over the world & unless a member lived close to a listed counsellor, your idea may not be a solution (in practice).

I'm sure there are some members of the forum who are qualified counsellors or medicos who might be willing to fill the gap. But on the other hand, those members may not have the emotional energy (themselves) to offer long term support.

Sometimes, a member needs an instant word of encouragement & support to get through a particularly bad day & other members can help just by listening & posting a short message in a thread in recognition of the person undergoing a crisis period.

It needs a very skilled, experienced person to relate to the type of depression a chronic illness sufferer experiences.

Before getting too low & depressed, it might be helpful if all members took the time to make a list of phone numbers & contacts of helpful links for themselves (if they haven't got family or friends to lean on).

In Australia, we have 24/7 counsellors only a phone call away & many social service, medical & volunteers who can be phoned in cases of crisis. We also have a service called "Nurse on Call" which offers 24/7 advice by qualified nurses.

Although I suspect many of us would be loath to make that phone call as we would suspect the person on the other end of the phone wouldn't believe or understand our specific issues.

Long term chronic illness sufferers usually need long term support (not really just a phone call in times of crisis).

It only takes one person to save a life, but how many of our members have that one special person.

And of course, how many people in times of crisis feel able to reach out & express their feelings. A good friend of mine took her life many years ago & after the funeral, three girlfriends & I got together to talk about our feelings & share memories.

Not one of us could understand why our dear friend didn't phone & talk to one of us. We were a pretty close knit group at that time. So being able to reach out to someone is an issue that also needs to be acknowledged.

There are there some great, thoughtful responses here. I guess I was thinking crisis contact details globally - ie. Australia, U.S.A., U.K. Being in Australia myself, I could suggest say, Lifeline. However, it is a little difficult to know the best way to go about it on a huge international blog forum!

Victoria, like you say, long term chronic illness sufferers do need long term support. A study published a few days ago showed that cancer sufferers who developed long term disabilities increased the risk of depression by a whopping 500 percent, whereas those who had acute short term issues suffered no long term mental health risks. It made me realise just how vulnerable people with long term CFS/ME are to severe depression.

Maybe an information section on this site about depression? I think most of us would recognise that having this illness can be emotionally devastating.

And yes, reaching out is really important. But how can we, anonymous bloggers on the other end of a computer, provide useful support and care for people who are in a dangerously depressed state?
Don't recall depression as a major symptom - if so a "clinical" depression and of course getting absolutely fed up with this dragging illness would depress anyone - keep the Psychos out and find things you personally enjoy lifts the spirits whilst one is "battling through"

Blog entry information

Last update

More entries in User Blogs

More entries from Nermalina