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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Depression Poll

Are you depressed?

  • Yes.

    Votes: 55 38.2%
  • No.

    Votes: 89 61.8%

  • Total voters
    144

GracieJ

Senior Member
Messages
772
Location
Utah
@Valentijn I did not find your rant off-topic. Actually, you stepped well into your own personal power, the perfect antidote, opposite, and reason against situational depression, which could well explain its absence in many.

Bravo.

Although I agree at the tenuous and two-faced nature of the politics behind recent NIH, P2P and IOM news, I am optimistic change is in the wind because of the growing momentum of individuals in their own personal power.

Whatever social and medical issues, this thing is reaching its tipping point. I truly believe it.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
i didn't imply that the cancer journey was easier, and since I have worked in bone marrow transplant, and inpatient units, I have seen very sad cases. However the cancer journey has a pathway that is set up for patients. It is certainly easier to navigate, and the support systems are much better equipped to activate on demand, at least in my area.

This is a huge contrast with what patients experience with ME. Better services, more respect, knowledgeable physicians, rapid access to care (surgery, specialist referrals, imaging, palliative care), funding from governments, from private donors, from pharma. And you tell the dr you have pain, they give you a prescription for opioids. (Not an easy feat for ME because you know you could get addicted.)

No one can deny the inequalities in health care.

My friend with leukaemia spends a lot of time in considerable pain. Maybe this is the reason:
Why are doctors under-medicating?
Evidence suggests that despite increased availability of strong opioids in the UK, pain resulting from advanced disease often goes untreated. NICE reports that “misinterpretations and misunderstanding have surrounded the use of strong opioids for decades and these are only slowly being resolved”. They add that “until recently, prescribing advice has been varied and sometimes conflicting”.

Professor Mike Bennett, a professor of palliative medicine at the University of Leeds, said on this issue, “Almost half of patients with advanced cancer are under-treated for their pain, largely because clinicians are reluctant to use strong opioids.”

Maybe things are very different where you are.
 

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
Depression and ME/CFS do have overlapping symptoms, making it difficult to separate the two when (like me for example) you have both.


Also I agree that depression is a sliding scale.

And I believe that people can be happy (or not depressed) in very difficult situations (for example many people on this thread suffering with ME/CFS), and also that people can be depressed when they have everything (their health, people who love them, a job they enjoy, etc). There is nothing simple about depression.


In my time I have had contact with 4 mental health professionals, and 2 were very unhelpful, one was helpful in the beginning but got very frustrated with me when I didn’t make progress after several months. The 4th one I spoke to most recently, listened to me understood what I was saying and at the end said she understood how people like me (with chronic long term illnesses) get cornered into programs like this one (it was a trial program an unwanted referral from the job centre) when its simply not suitable for them. At the end she didn’t recommend me for the program and wished me well. This is the sort of mental heath professional I would like to see - someone who will help with my depression and anxiety and know they understand my underling chronic illness, and that it is not caused by these problems and cannot be cured with therapy.


Also I used to feel that having ME and admitting to having depression was somehow letting us all down. Somehow by admitting to having both I was helping those who believe that ME is a mental disorder.

I still feel this sometimes.


Also the comparing ME/CFS to other chronic illnesses (like cancer or MS) isn’t pointless, its normal. I’m in no way comparing the suffering of different things or saying that some diseases are easier than others.

Many however do get better treatment by Drs, more research money, and the thing I am jealous of - is the ability they have to say they have (eg) cancer and whom ever they are talking to will know that is a real and difficult thing. Where as my experience is ‘ME thats the tired all the time thing right?’ And when you explain its more than that they don’t really listen.
 

Aurator

Senior Member
Messages
625
On another note, I would like to respond to Aurator's post:


The quoted excerpt is not an official line of anyone except the Wessely school, which may be extremely influential but has no official status. And although this manual and the views it represents may be extremely influential in the U.K., the same is certainly not true in the U.S. So when you say, "Unfortunately though, when we see the official line the profession are expected to take with ME/CFS patients, it's difficult not to see the whole profession as being complicit, willy nilly, in unacceptable beliefs about the nature of the illness," this appears to be an overly broad generalization in which the views of a certain segment of the profession are incorrectly generalized to the "whole profession."

In the U.S. and Canada, although it is common for doctors to refer patients with ME/CFS to psychiatrists, it is equally common for the psychiatrists to report that the patients have no psychiatric illness, and to send them back to the referring doctor.
I'm heartened that things appear to be more enlightened in the U.S.

The whole point of the generalization I was holding up for scrutiny was that the generalization is indeed unwarranted but that there are perfectly valid reasons why it tends to be made. In the UK the de facto dominance of the Wessely school and its guiding principles of treatment inevitably ropes all publicly funded psychiatrists treating ME/CFS, "willy nilly" ("whether they are willing or not") into the same circle of disrepute. It is only by first hand contact with the psychiatrist who happens to have been assigned to your case that you can establish to what extent that person aligns him or herself with the principles of the Wessely school. In some or even many cases there may be considerable disagreement on the part of the psychiatrist with those principles. However, considering the existence of documents like the one I linked to in my last post and its central role, here in the UK at least, in the treatment of ME/CFS, patients of the disease can hardly be blamed if they are quick to make negative generalizations about psychiatrists.
 

Mij

Messages
2,353
@Raines a doctor I saw years ago explained to me that certain types of depression that respond well to certain classes of antidepressants improve because it improves blood flow to the brain. From my understanding is the people with ME also have decreased celebral blood flow.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
In my time I have had contact with 4 mental health professionals, and 2 were very unhelpful, one was helpful in the beginning but got very frustrated with me when I didn’t make progress after several months. The 4th one I spoke to most recently, listened to me understood what I was saying and at the end said she understood how people like me (with chronic long term illnesses) get cornered into programs like this one (it was a trial program an unwanted referral from the job centre) when its simply not suitable for them. At the end she didn’t recommend me for the program and wished me well. This is the sort of mental heath professional I would like to see - someone who will help with my depression and anxiety and know they understand my underling chronic illness, and that it is not caused by these problems and cannot be cured with therapy.

I agree with everything you say, and I'm glad that this thread enables people with ME and depression to at least feel free to vote, and some like you have the courage to be 'out' about it. I hope it helps people to be able to do this.

I have also seen a good psychiatrist - after my suicide attempt in 1996, albeit months after discharge from hospital (a mainstream hospital due to the damage I had caused myself), when I was no longer depressed or suicidal. She listened to me. She believed me. And she validated me, telling me that I was a survivor - in a very positive, complimentary way. Someone (on here?) did rather deflate my balloon by telling me that it was a standard thing said by psychiatrists, but it achieved what was necessary - to make me look again at myself and recognise the truth in what she said - I was not weak or a failure for finally losing the battle with depression - I had in fact endured a lot in my life and had done well to cope for so long.

She accepted that I had now come out of the depression and was looking forward and making plans. That was it - no more appointments, just an offer of help if I needed it in future, which I haven't (not psychiatric help anyway).

It wasn't in the context of ME, as although I already had it, neither I nor anyone else knew what was wrong with me physically.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
GracieJ said:
@@zzz Do you know if it was heart failure in this case?

Yes; from the obituary in the New York Times:

LONDON, Dec. 14— Brynmor John, a Welsh legislator who served in the Labor Governments of Harold Wilson and James Callaghan during an 18-year career in the House of Commons, died Tuesday of a heart attack. He was 54 years old.

Just a point of clarification - heart failure is not the same as a heart attack. The differences are explained here.

This may be important in determining whether the death was likely to be related to ME or not.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
People make comments on PR all the time that social workers/therapists are lazy, stupid, etc, and just in this thread it was said that they sit behind a desk doing no work just taking people's money as well as that we are tools or brainwashed, etc. The social workers/therapists that I worked with as far back as my first volunteer job to the present were probably the single most hard working group of people that I ever encountered. We worked over time for little pay and often purchased supplies for our patients with our own money.

I think that you put everything extremely well, @Gingergrrl, and with a very high level of diplomacy - probably better than many of us manage. So it does seem especially unfair that you have felt that your profession and associated ones were under attack, and I am one of the many who has been guilty of using some shorthand terms to refer to the Wessely 'school' - my own term is 'psychoquacks', which I hoped was clear enough in its distinction from good parts of the profession, but maybe it isn't?

As for social workers, I was extremely lucky in the one I had after my suicide attempt, who was not only extremely caring but also someone I knew from a local campaigning group and with a good friend in common. I was offered the chance to have someone I didn't know, due to professional guidelines, but I didn't hesitate to say that I would be delighted for it to be her.

The one I was assigned later was not so good - treated me like a child. We also had common ground in that neither of us liked my ex-boyfriend - she was his sister! :lol:

I hope your step-daughter has a great day, and that you have a good REST. :sleep:
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
That's an interesting question @Valentijn

It seems to be a very small group of people. They have been very busy posting on a Facebook page today -- a previously banned member from here posted a link to this thread and said:

Then there were a whole bunch of lies posted by a few people. There is a lie that we banned a member and then deleted all their posts. Funny that because the person is still a member here. Then another member here also posted a lie on the FB page (not the first lie) regarding something I apparently didn't do related to moderation, but I did.

Then somebody else posted (hasn't been here for eons) posted:

That is a bald faced lie. No staff here harasses or intimidates members.

Apparently, none of us have ME. We are stooges for Wessely.

The member that was banned for breaking multiple rules posted the following:

So true patients don't get depressed? That is so ridiculous. So because we have a community lounge that allows any conversational topic, it is making patients look bad? That is ridiculous? So PR is a bunch of trolls? Ridiculous.

If you FB posters bothered to read the thread, you would know that you are so far away from reality, some might consider you to be deluded.

It's unfortunate that you spread lies just because somebody dares to mention depression in the same sentence as ME. :eek::eek::eek:

And that @Valentijn is where Anabel is coming from. :bang-head::bang-head::bang-head:

How bizarre. Could they themselves be trolls?

Maybe someone could post links there to a few threads on here - especially PR articles - that make it clear how untrue the allegations are. I can't as I'm not on Facebook.
 
Messages
10,157
How bizarre. Could they themselves be trolls?

Maybe someone could post links there to a few threads on here - especially PR articles - that make it clear how untrue the allegations are. I can't as I'm not on Facebook.

Not only is it bizarre, it's really malicious. I can't even describe it. But there are even suggestions that people should report Phoenix Rising for abusing donations and they suggest that Phoenix Rising should be taken down based on nothing more than their own assumptions and lies. They were actually providing links of who to report us to. We don't care though because we have nothing to hide, our use of donations is related to paying the costs of running the website and paying for a few articles. Despite their allegations, we have not been bought off by anybody, we are not secretly working with people hired by the government to destroy ME patients, and we do not hire people to be paid trolls. It's all so stupid and ridiculous. The lies are actually defamation and they defame the admin here constantly well as others. I am actually surprised they haven't been sued for some of their behaviour. Oh well, I just usually ignore them, it really isn't worth the hassle. It actually all sounds quite nutty on paper. :D:rofl::rofl::D

There is no point trying to point out reality to them, they don't want to hear it.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
There is no point trying to point out reality to them, they don't want to hear it.

I was thinking that there might be members or readers who are not 'in on' whatever is going on, and don't know what to believe, or have been taken in by the perpetrators. They may not all be lost causes.
 
Messages
10,157
Actually it isn't a violation of the forum rules to disparage members, their doctors, or their chosen treatments, but it sure should be!

It is absolutely against the rules to 'disparage' forum members. It would be extremely difficult for members if they were not allowed to comment that they thought a doctor wasn't up to their expectations or was offering a treatment that they thought was dangerous or even bogus or had made them worse. There is a huge difference between disparaging and criticism. I wonder how that would work, having a rule where we can't discuss a doctor in a negative sense or a treatment either. So somebody comes along and says "hey, I have just seen Simon Wessely and the CBT and GET he prescribed are doing wonders and he gave me such good information". To respond critically or 'disparage' GET and CBT as a treatment or say that Wessely may be offering bogus psychobabble would be against the rules. That just doesn't work.

There should be open conversation here about doctors, treatments, lab tests etc.

Anyways, if you wish to discuss rules, it's best to do it in the moderation forum. :)
 

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
@Raines a doctor I saw years ago explained to me that certain types of depression that respond well to certain classes of antidepressants improve because it improves blood flow to the brain. From my understanding is the people with ME also have decreased celebral blood flow.

Thats very interesting, I'll have to look into it. Do you remember which antidepressants improve blood flow to the brain?

I have also seen a good psychiatrist - after my suicide attempt in 1996, albeit months after discharge from hospital (a mainstream hospital due to the damage I had caused myself), when I was no longer depressed or suicidal. She listened to me. She believed me. And she validated me, telling me that I was a survivor - in a very positive, complimentary way. Someone (on here?) did rather deflate my balloon by telling me that it was a standard thing said by psychiatrists, but it achieved what was necessary - to make me look again at myself and recognise the truth in what she said - I was not weak or a failure for finally losing the battle with depression - I had in fact endured a lot in my life and had done well to cope for so long.

Being believed and validated is so important.
It doesn't matter if it was a standard thing to say, its true, and I bet the psychiatrist meant it, you are a survivor, you were in a bad place, bad enough to try and end your life and then you found your way out of the darkness.
It is amazing.

I tend to describe my depression as a noise and at the moment its almost ok, just quietly humming in the background.
 

biophile

Places I'd rather be.
Messages
8,977
Hi Research 1st. Sorry to hear about your terrible experience with the NHS. I used the phrase "a strong sense that the system has abandoned them" as a reflection of the system as a whole on the patient population in addition to whatever personal experiences individuals have endured, but you are certainly correct to point out that the system *has* in fact let down those in most need of assistance (including yourself), sometimes at the horrific expense of patient lives, either through disgraceful passive neglect or active abuse and forced quackery methods.

Patients who have endured or been threatened with involuntary measures have not only been abused by individuals, but the overall system as a collective has abandoned the ME patient population as a whole, regardless of individual interaction with health care services. As you mention, ME is not CF, there is a lack of diagnostic tools and effective treatments, with a codified withdrawal of further testing and medical treatment, and the herding of ME patients into CBT/GET.

I'm sure there will be some people who view the fatigue clinics as a sign that the patient population is not neglected. AFAIK, only a fraction of the patient population gets access to these places, and I have read very mixed reports from people who have attended. Components of what is offered may be helpful to a few patients: at best, the staff ignore the hype around CBT/GET and end up offering counselling and pacing in practice, but it's all down hill from there. I would rather get nothing.

None of this is adequate "treatment" for ME or even for "chronic fatigue". PACE showed that only a small fraction of Oxford criteria patients are modestly benefited by CBT/GET. Even those benefits have not been proven superior to placebo, and with objective outcomes either showing no clinically significant benefit or no benefit whatsoever. Not to mention the 80% or so candidates who were excluded from participating in the trial despite a CFS diagnosis of some sort. We don't know how many (or if any at all) "recovered", as they greatly weakened the criteria (after seeing other outcomes) and will not release the results as laid out in the protocol. The cognitive behavioural model of CFS and similar rationales have failed to deliver and led us up a blind alley for decades while biomedical research was largely ignored or neglected despite promising leads.

Jane Colby has highlighted the false allegations of child abuse in cases of childhood ME. The Tymes Trust have advised over 100 families facing suspicion/investigation, and none of these families have been found to be at fault. The factors blamed for this state of affairs were: 1) The misperception that ME is not a physical disease, but a mental health disorder. 2) The misperception that CBT/GET is always expected either to cure, or substantially improve the condition, or certainly will do no harm. 3) The misperception that the illness is neither long lasting nor severe.

ATOS (non ME specific) blamed its scandalous behaviour on rogue agents, but it turned out that the poor practices were so widespread that about 40% (IIRC) of the staff or cases were implicated. Similarly, I wonder how understated the abuse of ME patients is, the most well known cases are merely the tip of the iceberg. We rarely hear about this abuse, instead the media are more interested beating the drum about the alleged harassment of researchers with abusive emails and "damaging" freedom of information requests, while patients are left untreated, suffering, or dying.

The research progress has been slow and twisted so I don't really have faith about the short to medium term. There may be a few occasional good signs but too few and slow. I think you mentioned on another thread that enough research has already been done to guide the way. We also need large replication studies on appropriate cohorts for this research to be taken seriously and widely adopted. It is realities such as remaining at the bottom of the research funding priority in all countries which put things into perspective about how the patient population is truly regarded (on top of the usual social disparagement and medical service neglect). Particularly considering how the loose change given to research is often wasted on frivolous, poor quality, or non-representative research. So in addition to any personal experiences of being left to rot, the signs point towards the problems being widespread and nothing is changing fast. In the current climate it appears that the best most patients can hope for from the system in the short term is being left alone on uncontested income support.

I started writing about my (typical but not as extreme as some others) experiences with illness and period of depression, but this post is already too big and taking too long, so maybe later. I avoid doctors as much as possible, especially when I do not know of any effective treatment or any symptom management which I can tolerate. I've lost too much already due to poor advice or treatment side effects so I am reluctant. I just try to make do with what I have left and hope that one day in the future things will improve. Like you, I don't know how completely bedridden patients cope either. The exhaustion must be bad enough, but so many other symptoms become worse in ways which make "fatigue" the least concern. Seeing graphs such as the following certainly increases the realisation of abandonment:

92ttER5.png
 
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Messages
91
Many studies show high rates of depression in CFS patients, .

This is simply NOT true and is psycho blah blah
maybe u should read the psychiatric guidelines for ME by psychiatrist Dr Stein
Rates of secondary depression r SIMILAR 2 that in other chronic diseases !!!
 
Messages
15,786
This is simply NOT true and is psycho blah blah
maybe u should read the psychiatric guidelines for ME by psychiatrist Dr Stein
Rates of secondary depression r SIMILAR 2 that in other chronic diseases !!!
Did you read the rest of my post? Silly question, I guess.

But the reality is that those studies have reported those figures. We can close our eyes and pretend it didn't happen, or we can show why those figures are completely unreliable and often verging on fraudulent.

Denying reality isn't going to convince anyone that you don't have a primary psychiatric problem. A rational, logical, and scientific attack of those results and their underlying methodology is much more persuasive.
 
Messages
91
Did you read the rest of my post? Silly question, I guess.

But the reality is that those studies have reported those figures. We can close our eyes and pretend it didn't happen, or we can show why those figures are completely unreliable and often verging on fraudulent.

Denying reality isn't going to convince anyone that you don't have a primary psychiatric problem. A rational, logical, and scientific attack of those results and their underlying methodology is much more persuasive.

Did you read my reply ?? Obviously not ...