Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Chu, Jason et al

Ditto.

 

An experienced professional in this area found that actual concrete help with the problems of daily living like increases in social assistance, actual help with disability issues, fair representation of the client's case appeared to do more than counseling.

I appreciate these researchers work very, very much, and their drawing attention to this serious issue. However, obviously, we need much, much more than counseling to improve our situation.

 

@Trish you're absolutely right.

 

Counseling for pwME is one small piece of the pie. The rest of the pie is a huge disaster in public health terms, medical education, public opinion etc.

 

Yes.

 

It should be an optional small piece at that.

 

Somebody doing my grocery shopping or cleaning once a month would do more for my wellbeing than ten thousand hours of counselling.

 

Agreed. Actual help.

Someone to talk to helps. Friends and family may get burnt out with ME issues, but a counselor can listen.

However, the REAL issue is the terrible situation we're in, regardless of country.

The misguided beliefs of some, serve the aims of the powerful. And so we are treated quite badly indeed, and suffer from a great many injustices.

 

Not always.

There is nothing worse than going through all the effort to talk to someone in the hopes that they can improve your lot, only to find they can't.

To me that's no help at all. That's just an additional, unnecessary burden.

While I would agree appropriate counselling should be available for those who want it, for at least some of us with ME it's the equivalent of asking a person crawling out of a desert & dying of thirst whether they would prefer a Beaujolais or a Cabernet when what they desperately need is water.

Worse still when the person wielding the wine bottles acts all hurt and shocked because they are really very good vintages. They feel hurt, spurned and rejected when the person tries to crawl on to the water tap that's just out of their reach.

The best surgeons know when not to cut. As far as I can tell (& others may have more experience and knowledge than me) counsellors nearly always think they can help.

 

We increasingly tend to have a cultural assumption that ‘talking is good’. But we do not know that this is always the case.

 

Talking 'may' be good if there is a shared understanding, common reference points and experience.

In my experience this is hardly ever the case unless it's about something simple, and trivial - and even then people generally have a vested interest in not actually listening.

Talking without this shared experience is, in my experience, generally counterproductive.

Waffling is much more effective, doesn't solve anything, but it does at least give the impression of being heard, if ignored, without risk of making things worse.

 

@Invisible Woman @Peter Trewhitt @Wonko

Yes, there are too many variables. Some help, some harm, and some fall in between. We can pretty much extend this to any situation.

 

No, I don't think we should extend this to our situation. Not when it comes to ME patients.

I have personally been told that I should go have counselling to sort myself out so that I'd be able to get back "on track" on more than one occasion. This from a relative who had years of counselling but still needed to lean heavily on me for support.

Many patients were pushed down the counselling route, particularly before CBT became more prevalent. Counselling as a cure for ME. I have never heard of any of those counsellors turning people away even though they can't cure it. I'm not saying they never turned anyone away or were careful to.clarify the limits of the therapy, just that I've never heard of one doing that.

Given the huge physical effort ME patients would have to make to get there, not to mention the financial cost, if counselling isn't doing a significant amount of good then, at least in terms of payback, it's doing a fair bit of harm.

Unlike most other illnesses where you might take the attitude if it can't harm it's worth a go, if it doesn't help then it is harming. Especially if the patient is having to give up other things in order to undergo therapy. Unfortunately, unless a counsellor knows a lot about ME they won't know that.

 

@Invisible Woman

Oh, I meant unrelated situations. Where someone engages with say a dentist, or a lawyer, a contractor, a banker, you name it, and they may turn out to be good, benign or dreadful.

I take your point about counseling for ME, and agree. Although, I found my own n=1 experience, with only my husband being supportive, and really all other family, and most friends thinking I'd gone whacka-doodle, it was too painful to talk to friends and rellies. That was early on with ME. The need to vent. I'd never see a counselor now.

I'm not joking when I say this Forum has helped me. A community of people who share similar experiences.

There was no huge help with the counseling I got, except in one important area.

 

Personally I have had positive experiences of counselling and CBT, though both at times when my ME was in relative remission, and I was an active participant in the then therapy and personal growth culture before the onset on my ME in the 1980s.

However with our current state of knowledge, unless people have concurrent mental health issues, I would argue that counselling and psychotherapy in ME should be regarded in the same light as lifestyle choices and recreation activities. That is not to say that for some people their recreation and leisure activities are not of vital importance, but with ME there are for most more significant priorities. Official guidelines at present, though possibly commenting on the value of and the risks of different leisure activities, should not be saying that counselling is of more value than say gentle yoga, crafting or lunches out with friends.

[added - I would distinguish between counselling and access to an informed advisor in relation to managing ME. We discussed this in relation to our feed back on the draft NICE guidelines, and many of us agreed access to a medical key worker, probably most appropriately a specialist nurse would be very helpful for all.]

 

You are correct. I find talk therapy very depressing; I just sink into despair. In university I tried it a number of times, and it just made things much worse. I guess it has a long tradition, from the confessional to Freud. Now, I enjoy gardening, for instance, and my woes lift when I see the spinach coming up, or flowers on the tomatoes, or blossoming plants thriving.

 

I have had similar experiences. The only thing that lifts my mood is actually doing something practical to solve a problem, and if it's a problem that can't be solved, then focus on doing something else to distract myself. Talking endlessly about problems just makes me worse. There has actually been some research on this topic that has found that emotion focused coping such as venting is associated with higher levels of stress and lower quality of life. The "talk therapy" industry of course ignores this.

I am not a believer in counselling. I have had very limited personal experience with it but I do recall that after my first ME/CFS crash the government sent me to mandatory counselling because I couldn't attend school on a normal schedule. It made me feel 100x worse. I came out of every session crying, demoralised, feeling worthless and completely and utterly hopeless. Not to mention that even just physically getting there was a challenge. I think I only managed three sessions and I was like, to hell with this, they can put me in foster care if they want but I can't continue seeing this moron. She tried to convince me that my school absences were due to "perfectionism" and she asked me why I can't be more like her son who is satisfied with mediocrity and is perfectly happy with a C grade.

 

As Dr. Teitelbaum once put it: you have to be careful you don't get a psycho therapist.

 

Thank you for posting on our paper and your comments!

The paper was written in fact to acknowledge that while depression and anxiety play a role in suicide for ME/CFS and - for that matter - any chronic illness - it is far from the only factor. We discuss other factors and briefly explain why depression has been emphasized. For ME/CFS, the history goes back to conflation of ME/CFS with depression and other psychiatric disorders but it's also because the little research on chronic illness and suicide has weaknesses/ limitations. For example, these studies often use "psychological autopsies", i.e. they ask relatives/ friends after the fact if the person was depressed. They're not based on pre-suicide interviews of the person or even previously diagnosed depression documented in medical records.

Thus, our recommended assessment is in multiple parts. First, clinicians should decide if a person is suicidal. Second, how acute/ high the suicide risk is and whether immediate care (no this doesn't mean necessarily hospitalization: the trend is away from inpatient care) is needed. Third, examine for individual risk factors and address them. So yes, depression and other psychiatric diagnoses should be looked for but that isn't all. Take a look at Table 5: we ask that clinicians consider other factors including worsening ME/CFS symptoms, co-morbid conditions, functional limitations, social factors (poverty, homelessness), etc.

So treatment should correspond to what factors are identified that drive suicidality. So yes, medications and possibly CBT for depression/ anxiety if present (not CBT for ME/CFS itself) BUT also medications for symptoms/ co-morbid conditions; physical/ occupational therapy assessments (both help people adjust to any limits; PT and OTs have an important role to play that is not about work or graded exercise), assistive devices for functional limits; documentation and support to gain disability benefits. There is also a shift within the suicide treatment field also in recent years to identify individual risk/ protective factors and address them. For example, marriage and work may or may not be positive factors in a person's life depending on how well the spouses get along, whether the work is meaningful for the person, etc.

In our concluding paragraphs, we talk about obstacles to optimal care for suicidal patients. Many of them are societal issues. There is a little written now about how universal basic income, a mandated minimum hourly wage, or rent control may decrease suicide rates but this conversation is just starting in the US (and perhaps even the world).

It's a long paper so we don't expect everyone to have read through it. But my intent was NOT to write a paper that is repetitive of many papers about suicide and ME/CFS or even suicide and any chronic illness. Rather we wanted to focus on aspects that are known among patients and some clinicians but have not written about in the literature specifically in the context of suicide.