The 25% Disease: Is Chronic Fatigue Syndrome (ME/CFS) Unique in How Many People are Homebound?

[Dolphin]

From Cort Johnson:

The 25% Disease: Is Chronic Fatigue Syndrome (ME/CFS) Unique in How Many People are Homebound?


Lenny Jason's recent study indicates that 25% of people with ME/CFS are homebound, that only about 10% are working full-time, and less than 20% are working part-time.


These are tough numbers, and they beg the question: "Are any other diseases like that?" Check it out in http://bit.ly/20g5zrn i.e.

http://www.healthrising.org/forums/threads/the-25-disease-is-chronic-fatigue-syndrome-me-cfs-unique-in-how-many-people-are-homebound.4342

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Extracts:

The survey gave little help to those hoping to prove the homebound patients were simply more "psychiatric" than other people with ME/CFS.

It suggested they were just sicker. That mood disorders were not more amply distributed in the housebound patients indicated that mood disorders are not a factor in who becomes housebound or not.

In fact, the survey suggested that the housebound patients were coping about as well as the non-housebound patients. Neither psychological well-being or emotional distress correlated with illness severity; i.e. neither were factors in people becoming housebound.

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ME/CFS appears to have an almost unique ability to knock people out of the work force and back into their homes. The value of studies like these is not to validate what the ME/CFS community already knows, but to communicate to those outside the community how serious it can be.

Hopefully, the NIH is listening.

 

[Justin30]

It makes me think that many more are predominantly homebound...just my thoughts...i personally think there is a large cohort that sick.

 

[taniaaust1]

In fact, the survey suggested that the housebound patients were coping about as well as the non-housebound patients. Neither psychological well-being or emotional distress correlated with illness severity; i.e. neither were factors in people becoming housebound.

In my own case it is my severity which has brought issues to me such as suicide attempts due to not being able to deal with being this unwell in which Im reliant on others for my support but then having noone to give me the services im needing due to discrimination around this illness. So this study is surprising me (I know others with very severe ME/CFS have ended up suicidal due to their situation they find themselves then in, Im sure this illness can and does affect emotional wellbeing due to the impacts of it).

For the issues I do have around this illness, I do think I cope rather well (I'd like to see some of how some of those psychs who dont believe in this illnss cope with it if they had it!)

 

[ScottTriGuy]

being this unwell in which Im reliant on others for my support but then having noone to give me the services im needing due to discrimination around this illness. So this study is surprising me (I know others with very severe ME/CFS have ended up suicidal due to their situation they find themselves then in, Im sure this illness can and does affect emotional wellbeing due to the impacts of it).

All this compounded by health care systems that blame the ME patient and prescribe contraindicated treatment.

While HIV may be the most stigmatized disease generally in broader society, at least people living with HIV do usually find safety (and treatment) and experience less shaming within the health care system.

Conversely, ME patients very often experience shaming (and betrayal) from the health care system, the very institution relied on for support, making it an unsafe space.

No wonder living with ME in the medical system feels like living with trauma.

 

[taniaaust1]

I just had a thought. Maybe this study found less psychological issues in the severe ME group then I would of expected due to possibly this area having far better ME/CFS support services then other places? (so this studies results could be quite different to if it was done somewhere else)

 

[me/cfs 27931]

All this compounded by health care systems that blame the ME patient and prescribe contraindicated treatment.

While HIV may be the most stigmatized disease generally in broader society, at least people living with HIV do usually find safety (and treatment) and experience less shaming within the health care system.

Conversely, ME patients very often experience shaming (and betrayal) from the health care system, the very institution relied on for support, making it an unsafe space.

No wonder living with ME in the medical system feels like living with trauma.

Often, when talking with people who ask about my illness, I don't tell them I have CFS, because of the stigma.

I usually mention immune dysfunction (low NK cell count), high dose antivirals and antibiotics. Given the large gay population where I live, people generally assume I have HIV/AIDS.

It's less stigmatizing to let others assume I have HIV/AIDS than to come out of the closet and say I have CFS.

 

[me/cfs 27931]

Interesting that only 30% of those in the study are working at all (10% of the patients surveyed were employed full-time and less than 20% were employed part-time). That's astonishing.

Perhaps the next time yet another doctor asks what I expect them to do for me, I'll say I need a doctor to help me become one of the 30% healthiest ME/CFS patients -- so that I can go back to work.

 

[Research 1st]

In fact, the survey suggested that the housebound patients were coping about as well as the non-housebound patients. Neither psychological well-being or emotional distress correlated with illness severity; i.e. neither were factors in people becoming housebound.

RE: Mental health being strong in severely affected/housebound ME.

This is just my opinion as 30+ years sick (slow onset) and 23+ years severely affected never getting out the house since. (Experiences may be opposite of mine, identical, or similar). So this is just my experience, and not in anyway a statement of how others feel, as we all feel different. We can, however, share or at least recognize mindsets that utilize the ability to cope in very bad situations by using various methods to stay positive, or stay motivated not to give up hoping.

With nothing, you can't miss what you never had if you get sick as a child, you don't know what it means to be an adult, in society. So I don't.

I can dream of it, but can't lament over no longer being a teacher, or a parent, or a violinist who was popular and in demand and etc etc. As I was never anything, I remain, nothing. Maybe this isn't common but of the people I've talk to (who also got sick, e.g. age 12-18), they all seem to have this same psychological profile of acceptance of not yet having an adult life, and this makes them (now they are middle aged) crave it more and by wanting it more, they (and I) don't suffer from depression nb: I am not suggesting depression is a choice (I have anxiety and don't chose that either), but in people fortunate enough not to be depressed, this is how I personally cope and others like me....the desire for wanting better and holding on for that day, free from depression, I can do this, no matter what.

Holding on for decades, requires quite a lot of willpower and determination, but this is almost handed to you, because there is nothing out there, so you have to cope. You have one choice with severe ME. Take your own life, or don't. Sure it's not as easy as that, and so many factors come into play and people, I'm sure, swing between thinking one way or the other and I do too at times (depending on what life events happen), but still, if you're alive and breathing, this is good, this means there is always a chance you will survive and live to see the day you get treatment. This 'belief', I feel keeps you going. I think like this, now things have gotten so bad, each day I can't breathe without a horrible insidious muscle weakness. I'll just grunt away and breathe in a horrible way as if my diaphragm muscles are worn out and I've run out of life force. It might kill me, it might not. You just have to pray it won't, and you don't need to be religious to pray, you can just have inner faith, inner belief. Am I scared? Yes, no one will refer me for respiratory tests or admit me to Hospital, but this fear is something I have each day of my life now, I've grown accustomed to it. Each day you wake up alive then (always have breathing emergencies in my sleep), is a day to celebrate, even if you can't stand up you are at least not deceased. Keep going then, don't stop believing one day you will be free from this, that's what I do, with all symptoms.

There are no support services for ME in the UK, and as for severely affected, many can't even see a doctor! (GP's often refuse to do home visits and patients can't usually get to appointments even if granted one). There are no specialist nurses (unlike MS) and no clinics to contact who are designed for people with ME. There are (or were) CFS/ME clinics, but these do not cater for ME at all. Treatment in the UK is CBT, GET, Antidepressants, and being told to pace yourself guided by an Occupational Therapist, or even a Physiotherapist! These aren't rational treatments for people in wheelchairs or in bed who can't even prepare their own food or answer the phone, they also aren't evidence based. They are instead a promotional exercise, an advert left on whilst we're waiting for the film of 'life' to restart after the commercial break of the psych lobby......it never starts though, and we're ALL still waiting for LIFE to re-start: be we mild, moderately, or severely affected and that feeling of loss is unquantifiable. So we don't dwell on it daily, totally pointless as by doing so, only makes us feel more helpless. So we do the opposite, we grow tougher with each wasted year and cope with things we never thought we could. Experiences that would have most other people turn to quivering mental wrecks begging for help. Conversely, we dust it off, regroup and accept that this is what uncontrolled chronic disease does to the human body if you don't research and treat it.

In my view, humans with crippling physical diseases cope mentally the more they get sick because of inbuilt reactions to suffering we have inside us, to make us survive mental and physical torture (e.g. pain, e.g. chronic infections not allowed treatment and a myriad of disturbing neurological symptoms that have no diagnosis as no post diagnosis assessment of NEW symptoms/signs of other conditions has been permitted or arranged).

This perhaps stems from 3 factors that combine in a cohesive 'label' to make you targeted by the medical professional as a 'loser', doctors who could care, but chose not to (the real losers!).

Due to this...

1) You inwardly accept as an ME patient, no evidence based treatment exists and so don't seek treatment. If it does exist for others (almost exclusively Americans who can get health insurance or buy into health care plans) you can't work to earn money. With no money, you can't buy care anyway, even if other people can have it. It's therefore pointless to lust after it and think 'if only'. You adapt to being a 2nd class patients, when 1st class patients can get Ampligen, Antivirals, Rituximab. These are the Elite 0.1% of tens of millions of people, only a few of these patients exist in each state probably. No point being envious, you aren't one of them, but a lower grade. Fate has decided this, just as fate gave you ME but your sister or brother escapes healthy and has a job, friends, their own children and a life. So we have to deal with it, and we do. Not easy, but we do.

2)Disbelief from doctors that may offer you some help (experimentally), but won't. They mostly think that the severely affected, really are, simply malingering more than the moderately affected. Mistakingly, they tell you that their 'other patients' recover and you can too, just try harder and learn to cope better the say (ironically).

3) Psychiatry who tell doctors in the UK: Do not refer the CFS patient into hospital, as tests prove nothing, and it costs the tax payer money. GP's read this and act upon it. In the UK, newer incentives now are given to GP's (for all patients) that if they don't refer patients to hospital (costs money), the GP surgery is rewarded financially. Naturally, if they can, the doctor then doesn't refer the patient. This is for all patients, never mind PWME who then have to deal with the consequence of the MRC (PACE trial) & Psych Lobby historically coming together behind the scenes to deliver a cost effective positive message about 'Chronic Fatigue' to government. ME, never gets a look in, other than being said to be a story of Myth. So ME became a Myth. Neuroinflammation need not be present, and hey presto, the PACE trial was duly described as ''a thing of beauty''.

As a cumulative consequence, the multiple secondary conditions PWME (severe) develop are rarely detected in society (accept in ER visits). In addition, the ME sufferer may incorrectly attribute all their symptoms down to 'ME' - the brain. Some patients (of any severity) can pay with their lives for this error, when they discover they have Cancer or an infection that could have been treated, or their polyuria and insatiable thirst was actually Diabetes.

Myself and others severely affected don't go to the hospital or call a doctor, largely because of humiliation by medical professionals on arrival, and the disgusting way people in the UK are treated: both verbally and in medical records. So when we struggle to breathe (for example), I just do that, at home and never report it. Same with chest pain, same with partial seizures when I don't really know where I am, or what I am, such as after eating, passing urine or standing (episodic of course). So many patients LEARN not to report symptoms, as a coping mechanism. We do it, because when we tell people how we feel. This is dangerous to patients, but.....

1) The cause cannot be found (often because no tests are run) and the doctor becomes tired of failing to help you.
2) The cause cannot be found and (in socialised medical health care) the patient is blocked from re-attending medical appointments, by these appointments no longer being offered. So no way back in to the system, unless you move house.

*In America this is different as if you have income, you have private health care, and can pay to see a doctor. In the UK, with no money, In tax payer funded health care it's up to the discretion of the doctor if you're 'allowed' to have an appointment or not - including being seen in ER. (Nurse decides if you go through the door and wait maybe hours to see a doctor). 5hrs + sometimes. People with severe ME or POTS + ME can't possibly sit upright that long and there's nowhere to lie on the floor, or you can't if allowed as you're too weak chested and must sit up!!! (Catch 22). So a result, patients learn to cope with much more severe symptoms, and levels of pain, that would put healthy people in hospital, no question. Long term this is counterproductive, but this is how we are brainwashed by a system that deems us malingerers and fakes.

Unlike the Canadian system, the UK will not let a patient go straight to a specialist for a hospital outpatient appointment (e.g a neurologist or cardiologist), they are first pre-screened by a desk doctor, a GP (out of the hospital), with no specialist knowledge! Naturally, they don't believe ME exists, so usually they won't refer you. The patient thus doesn't get seen, or cannot get to the hospital in the first place (too sick) and the hospital consultants won't do home visits. The psych lobby benefit from this, as hospital doctors rarely see what severe ME does to patients and the common neurological conditions they develop alongside other neurological conditions that are accepted in these other conditions - but not us (they go undiagnosed).

So, in my view:

These are explanations why severe grade patients, globally, cope so well, at least as well as mild or moderately affected as they have NO OPTION.not to. When you're not as sick, you have more options. You can get mom/dad/husband to drive you down the freeway to the hospital to have tests, you might be sick on the way and turn white as a sheet, but you get there, somehow, you get there and you kiss the ground. As years pass, and your hormones fail, and you develop other conditions on top, so now instead of travel sickness, you are now so dizzy you get sick in your own house just moving your head, or intermittently pass out when you pee, never mind being driven in a moving vehicle with all the motion and noise. Then, your acquired chronic vertigo and neurosensory overload will prevent you going out the door, never mind the panic attacks and the photo-phobia, profound weakness, cardiac issues and mental confusion, that in summary, make you feel terrible to the point of simply laughing how ridiculous the idea is of going down the road to see a doctor.

So the more sick you get, the more trapped you get. The more trapped you get the more you adjust to being in an open jail, at home. From this you become institutionalized and naturally over time develop agoraphobia or get incredibly over loaded over being with other people (even just being in an ambulance), because you never see other people. When you get into a hospital lobby, you're amazed at the mass of people, the light ,the noise, the smells, the movement, the scale of the place.This is all incredibly overwhelming and your nerves that are always on tenterhooks at home (if you have autonomic dysfunction badly), then put you in panic mode, calmly waiting for a hospital appointment you may have waited a year for.

But....you know this. You know this your disease. You don't burst out crying, you might have to have Valium to bring your BP down, but the hellish experience, you did it. You might not come back again, but you can look back and say I had the ovaries or balls to do that, albeit with a paramedic or someone else helping you. You also cope with the rejection, you predict the neurologist will be useless or rude, and they are, so it was all a waste, all a stress over nothing, will relapse you, but you dust yourself off and within a day, any negativity is gone and you're back to your old self. Rejection, accepted, as rejection is what you're used to from the medical profession. Giving up is not an option, impossible.

The more sick you get, the less people believe you, and the harder skin you develop knowing people look down on you as a patient in your own family even, never mind friends (ex friends). I also think, although disturbing, the betrayal by family members, makes or breaks you. It makes me. I await the day to calmly say, ''I told you so'' and leave it there.

You become mentally tougher from this, you won't let skeptics (of any form) beat you, as in your current state, you must not lose, you're in far too a feeble state to succumb to mental health issues now. Later, fine, but not now.

So your mental health levels rise to cope with physical disabilities - the exact opposite the psychiatrists claim happens in ME. You accept loss, there is nothing appealing about yourself now you've lost everything, but what is appealing is the future, you place significance on hope, and you hope that you will be released from your torturous existence, not via suicide, but by medical research deducing how this all happened, and then getting in the queue like everyone else, for the magic 'pills'. Even if this only works 20%, this was worth waiting a life time for, as with 20% better function you can experience more life, and achievements. So compromise of predicting future treatments not working particularly well for severely affected long term patients, is inevitable and sensible. You plan for this now, years in advance, you train yourself routinely for setbacks in treatment failure, as this is all you've ever known!

Everything in my life is ruined, but I cope, and don't suffer from depression, as if I become depressed, they win. They being who purposefully did this to us, pretending they were 'just trying to help', by lobbying behind the scenes to gov't health agencies that we didn't have a neurological disease, and we were simply mentally dysfunctional, and wanted welfare handouts for secondary gain. (Sick minded disturbed people, convincing government health agencies, we are sick minded disturbed people!). What could possibly go wrong?!

If I give up, I am lost and won't be able to battle them in court to sue them in the future, what I stay alive for, justice for me, and just for all the other patients who have died along the way, people who never made it. Their deaths must not be in vain, so I adopt their tragic life end as my responsibility to get them justice on their behalf.

When I was less sick, I wasn't treated as badly. The more disabled I got, the more I irritated doctors that I didn't get better. Only recently have they too realized CBT/GET was based on a fabricated idea, they got even more hostile as there was literally nothing they could offer me. These more approachable 'modern day' doctors didn't set me up, they just vanished, because they know the situation is futile, depressing and hopeless. So the 'good guys' ignore you, and that's the best it gets - no health care monitoring, diagnosis, treatment = more disability.

That's why ME patients cope so well I feel. Universal Neglect = No way out, especially if you have slow onset ME and have time to adapt, and in a way, adapting gets you used to losing your freedom. (Unlike sudden onset). So again, you say, well ,it could be worse, at least I can do X,Y,Z and when that's reduced to well at least I'm not in ER today on a drip, or not being wired up to an ECG with cardiac vasospasm feels like a good day, because you know it can be worse, even if a good day, is achieving nothing, speaking to no one, and being fed on a tray like a hospital patient having them take your urine away, by your elderly parents who in a few years will pass away from old age.

I think the mental health issues (if any) in ME will come for some, AFTER the 'Breaking News' medical treatment is offered and it's successful, once you can get out the house, down the road, see other humans, talk to people, drive the car, walk the dog and think OMG have I missed out on this for 40 years and now I'm 60/70? Then I think people will flip, and the rage will come and effectively you'll look back and see you did a life sentence for a crime you never committed, and who put you there to begin with was criminal theorists, basically xenophobic, sexist, racist idea makers who first promoted in the 1990's (via the press) that ME was White Women Middle Class Over Thinkers, who get 'ME', the kind of nutjobs who blamed AIDS on Gays lifestyle and God was punishing them and not the heterosexual - the press infamously called AIDS, Gay Flu and kept running this insult. Yuppie Flu, came next for ME.

Then I think when you can't have it back, when you're wrinkled and using a walking stick (from old age not weakness), then it'll all come crashing down for all of us patients (50+) who got sick as teenagers and got left as spoiled goods down a cul-de-sac somewhere.

Currently, with no treatment,the more disabled you get, the more grateful you get for being alive. It's very bizarre why this happens, it must be a process of denial, things could be a lot better? Because the second you think negatively, and recognize this, even fleetingly, then you feel upset and full of anger you can't have your freedom. So you learn not to think like this, and develop a defensive moat for your castle that is rarely breeched, no matter what happens to you.

I've found, with no way out, there is no point seeking help if all doors are closed firmly in your face. You adapt to being in a 'crash' (what moderate CFS have after over doing it) every second of your life what some patients called PEM, but in severe ME it's not exertion related anymore - you always have it. You adapt to going to the bathroom in your bed, not washing (to save energy) and sleeping in your socks and pants and not washing them either. You adapt (because you never wash) of getting spots like a teenager in hard to reach places, but you can cheat and cut your hair off at least. But then you may struggle to do that eventually, due to developing cranial neuropathy (As in Lyme and MS). Even putting a drop of water on your skull, can feel like your head is burning, as if someone slapped your with the palm of their hand, but this burns so greatly you're desperate to take nerve pain killing drugs,but you cannot due to the vertigo and breathing weakness getting worse. I just pretend I have a hat on, or a helmet. A tight one, pretend I'm on a motorcycle. That's just how my skull feels. If it goes insane, then I do take the meds, and wish I hadn't and curse everything in my beastly life once the old eye balls are bobbing up and down.

Who do I tell? No doctor, because when you do, they pretend not to know, or say you're an enigma, or a mysterious case. What they really think, is you're a somatizer, and only people with a 'real' condition like MS would have your symptoms and as you don't have MS, then you can't have it. (Knowing this, what do you do, if you can't get out the house to find a new doctor?). You don't get any medical care, zero.

You simply adapt. I think it's human nature and not unique to this disease. The fight for survival and the yearning that one day, justice will be served against the people who did this to tens of millions of other people around the world, for personal gain. I bet it's also seen out of illness, such as in people who have to get through a war, or are falsely imprisoned.

That's what keeps patients going I feel. Hope, that one day, this will all end, and we will get treatment. If the patients get treatment, they have the energy to take legal action, with legal action comes closure, and with closure comes a washing away of the deadness that blighted your soul for so long. That chapter over, a new chapter starts. That's the fantasy, escaping the day you got the worse infection ever, stuck on repeat.

Until that day happens, we must not give in as unwanted garbage disposed humans society deems worthless. We must never give up, and must fight on, regardless of how awful we feel and how awful our quality of life is knowing how utterly alone we are.

All this drives me forward and you guys too I'm sure.

We await the sunshine, and we await friendships and love - basic human right stolen from us by government sympathizers who sided with the deranged concept, CFS and ME is a choice, and can be 'untaught' by CBT GET. (Exactly the same idea used to be give to Gays, that people chose to be gay). That ignorance, eventually left us. The same will happen to us, one-day, someone will say NO. You can't do this to these people, you MUST accept them, and treat them like we treat others.

Give it 10 years and we should be there that society accept us, 5 years perhaps for the first preliminary changes of patients trying different drugs, maybe in some sub-groups. A long time to wait, but it will come.

ME as a choice of lifestyle, due to alleged 'stress' and mal-adapative coping strategies leading to de-conditioning is the most wicked, but impressively perfected medical lie, told about a minority group since the last holocaust.

Knowing this gargantuan injustice, you have to live every part of your life you can, even if it's living in hell, it is at least living and life is better than death no matter how hard the corrupt system whips you. Eventually the ideological birch rod will snap and a healing rational based system of disease management will be granted in it's place All of this motivates me to see the day of genuine evidence based treatment being funded and given to people desperate for treatment.

 

[duncan]

Heart-breaking insight only a pwME could have, @Research 1st . Thank you for putting it into words.

 

[taniaaust1]

So your mental health levels rise to cope with physical disabilities - the exact opposite the psychiatrists claim happens in ME. You accept loss, there is nothing appealing about yourself now you've lost everything, but what is appealing is the future, you place significance on hope, and you hope that you will be released from your torturous existence, not from suicide, but by medical research deducing how this all happened, and then getting in the queue like everyone else, for the magic 'pills'. Even if this only works 20%, this was worth waiting a life time, as with 20% better function you can experience more life, and achieve more. So compromise of future treatments not working particularly well for severely affected long term patients, is inevitable and sensible. You plan for this now, years in advance, you train yourself for setbacks in treatment failure, as this is all you've ever known!

Everything in my life is ruined, but I cope, and don't suffer from depression, as if I became depressed, they win. They being who purposefully did this to us, pretending they were 'just trying to help', by lobbying behind the scenes to gov't health agencies that we didn't have a neurolgoical disease, and we were simply mentally dysfunctional, and wanted welfare handouts for secondary gain. (Sick minded disturbed people, convincing government health agencies, we are sick minded disturbed people!). What could possibly go wrong?!

If I give up, I am lost and won't be able to battle them in court to sue them in the future, what I stay alive for, justice for me, and just for all the other patients who have died along the way, people who never made it. Their deaths must not be in vain, so I adopt their tragic life end as my responsibility to get them justice on their behalf.

When I was less sick, I wasn't treated as badly.

Im surprised I read as much of your post as I did (i'll try to read the rest another day) but it was completely fascinating your view and I think u could be onto something with this and its true, part of my coping ability comes from not wanting to let "them win".. its criminal how we've been treated so we will go on to hopefully will this fight for all of us. It becomes not "my" fight but "our fight" and there is a strength to be drawn in this manner of thinking.

The more disabled I got, the more I irritated doctors that I didn't get better.

or the more they fear you so dont want to know you as you represent to them their failure when they cant treat you.

. So again, you say, well ,it could be worse, at least I can do X,Y,Z and when that's reduced to well at least I'm not in ER today on a drip, or not being wired up to an ECG with cardiac vasospasm feels like a good day, because you know it can be worse, even if a good day, is achieving nothing, speaking to no one, and being fed on a tray like a hospital patient having them take your urine away, by your elderly parents who in a few years will pass away from old age.

nods. a good day for me is one in which I dont end up in hospital. Any day I dont, I have to view as a not to bad day. Hospital or not hospital is one of the ways I view how my day has been.

I think the mental health issues (if any) in ME will come for some, AFTER the 'Breaking News' medical treatment is offered and it's successful, once you can get out the house, down the road, see other humans, talk to people, drive the car, walk the dog and think OMG have I missed out on this for 40 years and now I'm 60/70? Then I think people will flip, and the rage will come and effectively you'll look back and see you did a life sentence for a crime you never committed,

Then I think when you can't have it back, when you're wrinkled and using a walking stick (from old age not weakness), then it'll all come crashing down for all of us patients (50+) who got sick as teenagers and go left as spoiled goods down a cul-de-sac somewhere.

that's a new perspective on things for me and one I can see which will end up to be true for many. Once this illness is accepted and more understood, it will be more safe to let the real bottled emotions out over it, all those things which have been suppressed. Once treatments are out there and people start to get slightly better, they will be able to start analysing everything which has gone on around this more ..and really look at how the picture really was.
We often are carrying like blinkers around with us, making sure we dont go looking too deep into areas we wouldnt handle.

im looking forward to reading the rest of your post when Im able if i remember its here.

 

[ScottTriGuy]

part of my coping ability comes from not wanting to let "them win"

Reminds me of the quote that went something like:

"Sometimes I feel like giving up, but then I remember those fuckers I have to prove wrong"

 

[meandthecat]

An Evil Cradling...is the title of a book by Brian Keenan in which he describes being kidnapped and held in Beirut by Shi'ite militia. The book is very moving but it is the title that stayed with me for it seems to describe a broader process and one that speaks of the isolation, abuse and suffering of those deemed by society to be 'undeserving'.

The stripping away of all that is light and good and the hardening of what is left, and even if things improve still it remains like a jagged reef below the water. It is the consequence of abuse, not a natural process but something inflicted on one person by another, a psychological process.

I doubt that this has passed unnoticed by the high priests of psychology and may be the intended outcome. Social engineering to redefine illness as a thought crime.

First they came for those with 'CFS' and lower back pain............

 

[Ben H]

RE: Mental health being strong in severely affected/housebound ME.

This is just my opinion as 30+ years sick (slow onset) and 23+ years severely affected never getting out the house since. (Experiences may be opposite of mine, identical, or similar). So this is just my experience, and not in anyway a statement of how others feel, as well all feel different. We can, however, share or at least recognize mindsets that utilize the ability to cope in very bad situations by using various methods to stay positive, or stay motivated not to give up hoping.

With nothing, you can't miss what you never had if you get sick as a child, you don't know what it means
to be an adult, in society. So I don't.

I can dream of it, but can't lament over no longer being a teacher, or a parent, or a violinist who was popular and in demand and etc etc. As I was never anything, I remain, nothing. Maybe this isn't common but of the people I've talk to (who also got sick, e.g. age 12-18), they all seem to have this same psychological profile of acceptance of not yet having an adult life, and this makes them (now they are middle aged) crave it more and by wanting it more, they (and I) don't suffer from depression nb: I am not suggesting depression is a choice (I have anxiety and don't chose that either), but in people fortunate enough not to be depressed, this is how I personally cope and others like me....the desire for wanting better and holding on for that day, free from depression, I can do this, no matter what.

Holding on for decades, requires quite a lot of willpower and determination, but this is almost handed to you, because there is nothing out there, so you have to cope. You have one choice with severe ME. Take your own life, or don't. Sure it's not as easy as that, and so many factors come into play and people I'm sure swing between thinking one way or the other and I do to at times (depending on what life events happen), but still, if you're alive and breathing, this is a good, this means there is always a chance you will survive and live to see the day you get treatment. This 'belief', I feel keeps you going. I think this, now things have gotten so bad, each day I can't breathe without a horrible insidious muscle weakness. I'll just grunt away and breathe in a horrible way as if my diaphragm muscles are worn out and I've run out of life force. It might kill me, it might not. You just have to pray it won't, and you don't need to be religious to pray, you can just have inner faith, inner belief. Am I scared? Yes, no one will refer me for respiratory tests or admit me to Hospital, but this fear is something I have each day of my life now, I've grown accustomed to it. Each day you wake up alive then (always have breathing emergencies in my sleep), is a day to celebrate, even if you can't stand up you are not deceased. Keep going them, don't stop believing one day you will be free from this, that's what I do, with all symptoms.

There are no support services for ME in the UK, and as for severely affected, many can't even see a doctor!
(Refuse to do home visits and patients can't usually get to appointments even if granted one). There are no specialist nurses (unlike MS) and no clinics to contact who are designed for people with ME. There are (or were) CFS/ME clinics, but these do not cater for ME at all. Treatment in the UK is CBT, GET, Antidepressants, and being told to pace yourself guided by an Occupational Therapist, or even a Physiotherapist!. These aren't rational treatments for people in wheelchairs or in bed who can't even prepare their own food or answer the phone, they also aren't evidence based. They are instead a promotional exercise, an advert left on waiting for the film of 'life' to restart after the commercial break of the psych lobby..it never starts though and we're ALL still waiting for LIFE be it mild, moderately, or severely affected and that feeling of loss is unquantifiable. So we don't dwell on it daily, totally pointless and only makes us feel more helpless. So we do the opposite, we grow tougher with each wasted year and cope with things we never thought we could, that other people would be quivering mental wrecks begging for help, conversely, we dust it off, regroup and accept it, this is what uncontrolled chronic disease does to the human body if you don't research and treat it.

In my view, humans with crippling physical diseases cope mentally the more they get sick because of inbuilt reactions to suffering we have to make us survive mental and physical torture (e.g. pain, e.g. chronic infections not allowed treatment, e.g a myriad of disturbing neurological symptoms that have no diagnosis as no post diagnosis assessment of NEW symptoms/signs of other conditions has been permitted or arranged).

This perhaps stems from 3 factors that combine in a cohesive 'label' to make you targeted by the medical professional as a 'loser', doctors who could care but choses not to (the real losers!).

Due to this...

1) You inwardly accept as an ME patient, no evidence based treatment exists and so don't seek treatment. If it does exist for others (almost exclusively Americans who can get health insurance or buy into health care plans) you can't work to earn money, so you have no money. With no money, you can't buy it anyway, even if other people can have it. It's therefore pointless to lust after it and think 'if only'. You adapt to being a 2nd class patients, when 1st class patients can get Ampligen, Antivirals, Rituximab. These are the Elite 0.1% of tens of millions of people, only a few of these patients exist in each state. No point being envious, you aren't one of them, but a lower grade. Fate has decided this, just as fate gave you ME and your sister or brother is healthy and has a job, friends, their own children and a life. So we have to deal with it, and we do. Not easy, but we do.

2)Disbelief from doctors that may offer you some help (experimentally), but won't. They mostly think that the severely affected really are, and are simply malingering more than the moderately affected. Mistakingly, they tell you that their 'other patients' recover and you can too, just try harder and learn to cope better the say (ironically).

3) Psychiatry who tell doctors in the UK: Do not refer the CFS patient into hospital, as tests prove nothing, and it costs the tax payer money. GP's read this and act upon it. In the UK, newer incentives now are given to GP's (for all patients) that if they don't refer patients to hospital (costs money), the GP surgery is rewarded financially. Naturally, if they can, the doctor then doesn't refer the patient. This is for average patients, never mind PWME who then have to deal with the consequence of the MRC (PACE trial) Psych Lobby historically coming together behind the scenes to deliver a cost effective positive message about 'Chronic Fatigue' to government, ME,never gets a look in, other than being said to be a story of Myth. So ME became a Myth. Neuroinflammation need not be present, and hey presto, the PACE trial was duly described as ''a thing of beauty''.

As a cumulative consequence, the multiple secondary conditions PWME (severe) develop are rarely detected in society (accept in ER visits), and the ME patient incorrectly may mistake all their symptoms are down to 'ME' - the brain. Some patients (of any severity) can pay with their lives for this error, when they discover they have Cancer or an infection that could have been treated, or their polyuria and insatiable thirst was actually Diabetes.

Myself and others severely affected don't go to the hospital or call a doctor, largely because of humiliation by medical professionals on arrival, and the disgusting way people in the UK are treated: both verbally in medical records, and face to face. So when we struggle to breathe (for example), I just do that, at home and never report it. Same with chest pain, same with partial seizures when I don't really know where I am, or what I am, such as after eating, passing urine or standing (episodic of course). So many patients LEARN not to report symptoms, as a coping mechanism. We do it, because when we tell people how we feel. This is dangerous to patients, but.....

1) The cause cannot be found (often because no tests are run) and the doctor becomes tired of failing to help you
2) The cause cannot be found and (in socialised medical health care) the patient is blocked from re-attending medical appointments, by these appointments no longer being offered. So now way back in unless you move house.

*In America this is different as if you have money,you have private health care, and can pay to see a doctor. In the UK, with no money, In tax payer funded health care it's up to the discretion of the doctor, if you are 'allowed' to have an appointment or not - including being seen in ER. (Nurse decides if you go through the door and wait or hours to see a doctor). 5hrs + sometimes. People with severe ME or POTS + ME can't possibly sit upright that long and there's no where to lay on the floor, or you can't lay on the floor as you're too weak chested and must sit up!!! (Catch 22). So a result, patients learn to cope with much more severe symptoms, and levels of pain, that would put healthy people in hospital, no question. Long term this is counterproductive, but this is how we are brainwashed by a system that deems us malingerers and fakes,

Unlike the Canadian system, the UK will not let a patient go straight to a specialist in a Hospital outpatient appointment (e.g a neurologist or cardiologist), they are first pre-screened by a desk doctor, a GP (out of the Hospital), with no specialist knowledge!. Naturally, they don't believe ME exists, so usually they won't refer you. The patient thus doesn't get seen, or cannot get to the hospital in the first place (too sick) and the hospital consultants won't do home visits. The psych lobby benefit from this, as Hospital doctors, rarely see what severe ME does to patients and the common neurological conditions they develop alongside other neurological conditions that are accepted.

So, in my view:

These are explanations why severe grade patients, globally, cope so well, at least as well as mild or moderately affected as they have NO OPTION.not to. When you're not as sick, you have more options. You can get mom/dad/husband to drive you down the freeway to the Hospital to have tests, you might be sick on the way and turn white as a sheet, but you get there, somehow, you get there and you kiss the ground. As time passes, and your hormones fail, and you develop other conditions on top, so now instead of travel sickness, you are now so dizzy you get sick in your own house just moving your head, or intermittently pass out when you pee, never mind being driven in vehicle with all the movement and noise, then chronic vertigo and neurosensory overload will prevent you going out the door, never mind the panic attacks and the photo-phobia, or the profound weakness, cardiac issues and mental confusion that in summary, make you feel terrible to the point of simply laughing how ridiculous the idea is of going down the road to see a doctor. So the more sick you get, the more trapped you get. The more trapped you get the more you adjust to being in an open jail, at home. From this you become institutionalized and naturally over time develop agoraphobia or get incredibly over loaded over being with other people (even just being in an ambulance), because you never see them. When you get into a Hospital lobby, you're amazed at the mass of people, the light ,the noise, the smells, the movement, the scale of the place.This is all incredibly overwhelming and your nerves that are always on tenterhooks at home (if you have autonomic dysfunction badly), then put you in panic mode, calmly waiting for a hospital appointment you may have waited a year for.

But....you know this. You know this your disease. You don't burst out crying, you might have to have Valium to bring your BP down, but the hellish experience, you did it. You might not come back again, but you can look back and say I had the ovaries or balls to do that, albeit with a paramedic or someone else helping you. You also cope with the rejection, you predict the neurologist will be useless or rude, and they are, so it was all a waste, all a stress over nothing, will relapse you, but you dust yourself off and within a day, any negativity is gone and you're back to your old self. Rejection, accepted, as rejection is what you're used to from the medical profession. Giving up is not an option, impossible.

The more sick you get, the less people believe you, and the harder skin you develop knowing people look down on you as a patient in your own family even, never mind friends (ex friends). I also think, although disturbing, the betrayal by family members, makes or breaks you. It makes me. I await the day to calmly say, ''I told you so'' and leave it there.

You become mentally tougher from this, you won't let skeptics (of any form) beat you, as in your current state, you must not lose, you're in far too a feeble state to succumb to mental health issues now. Later, fine, but not now.

So your mental health levels rise to cope with physical disabilities - the exact opposite the psychiatrists claim happens in ME. You accept loss, there is nothing appealing about yourself now you've lost everything, but what is appealing is the future, you place significance on hope, and you hope that you will be released from your torturous existence, not from suicide, but by medical research deducing how this all happened, and then getting in the queue like everyone else, for the magic 'pills'. Even if this only works 20%, this was worth waiting a life time, as with 20% better function you can experience more life, and achieve more. So compromise of future treatments not working particularly well for severely affected long term patients, is inevitable and sensible. You plan for this now, years in advance, you train yourself for setbacks in treatment failure, as this is all you've ever known!

Everything in my life is ruined, but I cope, and don't suffer from depression, as if I became depressed, they win. They being who purposefully did this to us, pretending they were 'just trying to help', by lobbying behind the scenes to gov't health agencies that we didn't have a neurolgoical disease, and we were simply mentally dysfunctional, and wanted welfare handouts for secondary gain. (Sick minded disturbed people, convincing government health agencies, we are sick minded disturbed people!). What could possibly go wrong?!

If I give up, I am lost and won't be able to battle them in court to sue them in the future, what I stay alive for, justice for me, and just for all the other patients who have died along the way, people who never made it. Their deaths must not be in vain, so I adopt their tragic life end as my responsibility to get them justice on their behalf.

When I was less sick, I wasn't treated as badly. The more disabled I got, the more I irritated doctors that I didn't get better. Only recently have they too realized CBT/GET was based on a fabricated idea, they got even more hostile as there was literally nothing they could offer me. These more approachable 'modern day' doctors didn't set me up, they just vanished, because they know the situation is futile, depressing and hopeless. So the 'good guys' ignore you, and that's the best it gets - no health care monitoring, diagnosis, treatment = more disability.

That's why ME patients cope so well I feel. Universal Neglect = No way out, especially if you have slow onset ME and have time to adapt, and in a way, adapting gets you used to losing your freedom. (Unlike sudden onset). So again, you say, well ,it could be worse, at least I can do X,Y,Z and when that's reduced to well at least I'm not in ER today on a drip, or not being wired up to an ECG with cardiac vasospasm feels like a good day, because you know it can be worse, even if a good day, is achieving nothing, speaking to no one, and being fed on a tray like a hospital patient having them take your urine away, by your elderly parents who in a few years will pass away from old age.

I think the mental health issues (if any) in ME will come for some, AFTER the 'Breaking News' medical treatment is offered and it's successful, once you can get out the house, down the road, see other humans, talk to people, drive the car, walk the dog and think OMG have I missed out on this for 40 years and now I'm 60/70? Then I think people will flip, and the rage will come and effectively you'll look back and see you did a life sentence for a crime you never committed, and who put you there to begin with was criminal theorists, basically xenophobic, sexist, racist idea makers who first promoted in the 1990's (via the press) that ME was White Women Middle Class Over Thinkers, who get 'ME', the kind of nutjobs who blamed AIDS on Gays lifestyle and God was punishing them and not the heterosexual - the press infamously called AIDS, Gay Flu and kept running this insult. Yuppie Flu, came next for ME.

Then I think when you can't have it back, when you're wrinkled and using a walking stick (from old age not weakness), then it'll all come crashing down for all of us patients (50+) who got sick as teenagers and go left as spoiled goods down a cul-de-sac somewhere.

Currently, with no treatment,the more disabled you get, the more grateful you get for being alive. It's very bizarre
why this happens, it must be a process of denial, things could be a lot better? Because the second you think negatively, and recognize this, even fleetingly, then you feel upset and full of anger you can't have your freedom. So you learn not to think like this, and develop a defensive moat for your castle that is rarely breeched, no matter what happens to you.

I've found, with no way out, there is no point seeking help if all doors are closed firmly in your face. You adapt to being in a 'crash' (what moderate CFS have after over doing it) every second of your life what some patients called PEM, but in severe ME it's not exertion related anymore - you always have it. You adapt to going to the bathroom in your bed, not washing (to save energy) and sleeping in your socks and pants and not washing them either.
You adapt (because you never wash) of getting spots like a teenager in hard to reach places, but you can cheat and cut your hair off at least. But then you may struggle to do that eventually, due to developing cranial neuropathy (As in Lyme and MS). Even putting a drop of water on your skull, can feel like your head is burning as if someone slapped your with the palm of their hand, but this burns so greatly you're desperate to take
nerve pain killing drugs,but you cannot due to the vertigo and breathing weakness getting worse. I just pretend I have a hat on, or a helmet. A tight one, pretend I'm on a motorcycle. That's just how my skull feels. If it goes insane, then I do take the meds, and wish I hadn't and curse everything in my beastly life once the old eye balls are bobbing up and down.

Who do I tell? No doctor, because when you do, they pretend not to know, or say you're an enigma, or a mysterious case. What they really think, is you're a somatizer, and only people with a 'real' condition like MS would have your symptoms and as you don't have MS, then you can't have it. (Knowing this, what do you do, if you can't get out the house to find a new doctor?). You don't get any medical care, zero.

You simply adapt. I think it's human nature and not unique to this disease. The fight for survival and the yearning
that one day, justice will be served against the people who did this to tens of people around the world, for personal gain. I bet it's also seen out of illness, such as in people who have to get through a war, or are falsely imprisoned.

That's what keeps patients going I feel. Hope, that one day, this will all end, and we will get treatment. If the patients get treatment, they have the energy to take legal action, with legal action comes closure, and with closure comes a washing away of the deadness that blighted your soul for so long. That chapter over, a new chapter starts. That's the fantasy, escaping the day you got the worse infection ever, stuck on repeat.

Until that day happens, we must not give in as unwanted garbage disposed humans society deems worthless. We must never give up, and must fight on, regardless of how awful we feel and how awful our quality of life is knowing how utterly alone we are.

All this drives me forward and you guys too I'm sure.

We await the sunshine, and we await friendships and love - basic human right stolen from us by government sympathizers who sided with the deranged concept, CFS and ME is a choice, and can be 'untaught' by CBT GET.
(Exactly the same idea used to be give to Gays, that people chose to be gay). That ignorance, eventually left us.
The same will happen to us, one-day, someone will say NO. You can't do this to these people, you MUST accept them, and treat them like we treat others.

Give it 10 years and we should be there that society accept us, 5 years for the first preliminary changes of patients trying different drugs perhaps in some sub-groups. A long time to wait, but it will come.

ME as a choice of lifestyle, due to alleged 'stress' and mal-adapative coping strategies leading to de-conditioning is the most wicked, but impressively perfected lie told about a minority group since the last holocaust.

Knowing this gargantuan injustice, you have to live every part of your life you can, even if it's living in hell, it is at living and life is better than death no matter how hard the corrupt system whips you, eventually the ideological birch rod will snap and a healing rational based system of disease management will be granted in it's place All of this motivates me to see the day of genuine evidence based treatment being funded and given to people desperate for treatment.

As a UK patient, this is so bang on the money. Hospital is a degrading experience here with M.E, the smirks, the knowledge you know you are being labelled 'nutter' as soon as you walk/wheeled in. I've actually had an apology from the matron at one hospital where I was treated so badly, but only when she realised it was M.E and that was the same illness that had debilitated her friend.

It only gets real when it hits you, or someone close to you.

Anyway, one of the best posts I've read on here, I don't think anyone could explain it better.

B

 

[*GG*]

As a UK patient, this is so bang on the money. Hospital is a degrading experience here with M.E, the smirks, the knowledge you know you are being labelled 'nutter' as soon as you walk in. I've actually had an apology from the matron at one hospital where I was treated so badly, but only when she realised it was M.E and that was the same illness that had debilitated her friend.

It only gets real when it hits you, or someone close to you.

Anyway, one of the best posts I've read on here, I don't think anyone could explain it better.

B

See this thread, maybe one those Luddites is going to be in our camp soon!

http://forums.phoenixrising.me/inde...-opportunity-disease-huff-post-article.44729/

GG

 

[Sidereal]

Brilliant post, @Research 1st. Thank you for writing all that. I hope it didn't deplete too much of your energy.

 

[Kinesis]

@Research 1st, wow. Thank you. I can't even express how important this is to read. There are no words, but I'm going to try anyway.

It's like listening to someone describe distilling water in hell using only willpower.

It makes me angry, and it makes me fall in love. It makes me want to fight. It makes me profoundly sad and yet determined never to cry, for to do so would be to give up, and you never will.

I can't imagine what backlash you had to experience to give this to us. So once again, thank you.

 

[justy]

@Research 1st - spot on. Thank you.

 

[Justin30]

@Research 1st

ME as a choice of lifestyle, due to alleged 'stress' and mal-adapative coping strategies leading to de-conditioning is the most wicked, but impressively perfected lie told about a minority group since the last holocaust.

I thought it....am happy you said it....maybe cause I havent read this thread MEACTION or other advocate societies should spread this info to the masses of all of the severely ill.....

I personally think its time for the Community to reach out to get a spoke person or have a commercial made....

The inhunmanity is unfathamable....wreched and sickening to me....

I know stuff is happening......but I will say it Our Adovacates and groups need to be on the same page and start showing this to the masses. Through media....commercials these type of things.

Its time for all groups to meet. Face to face. And come up with a plan now!

I see way to much playing Dr (Dont get me wrong sharing info is on what worked and what didnt has helped).....but also care support and love. PR is and has helped me immensley...if you have a voice hear....that voice can be used for change elswhere too....

I just rather treatment and research and that comes with advacoacy and research.

The energy needs now to be used for Action, Change and Treatment.



70 yrs of this and counting the diseases was discovered within 3 to 5 years of MS.....

Its mind blowing, sad, and shameful...

 

[themjay]

Excellent post - I can't imagine how much that has taken out of you but thank you!

I have just returned from another humiliating trip to the GP - under pressure from relatives who cannot believe that someone suffers continual chest pain without consulting the GP I foolishly gave in. I tried to describe my concerns re POTS, low blood volume etc which was met by a sneer and a definitive "it's impossible to have lower blood volume" My purple hands and dizziness whilst sitting in my wheelchair did not impress either - simply "deconditioning".This despite me taking my file of current research to show. Of course they have no time to read this as they have "real" patients to see. My relatives feel the doctors should be given a picture of how bad ME is so that is why they encourage me to attend the surgery. It has quite the opposite effect as every new untestable symptom accrues further prejudice in their mind. I would dearly like to never darken another surgery again but these people are also the gatekeepers for our meagre benefits and as mine are due for renewal more stress beckons....

 

[PurpleButterfly]

@Research 1st

I read slowly through all you have written and was going to add things that I thought of that you hadn't covered
Um...but you covered just about everything

So thank you and I hope that didn't take up too much of yourself and that you can feel all the love going back to you from people in the same situation all over the UK.

I agree with just about everything you have said. I don't tend to call doctors or emergency services either as 'they can't do anything ' or everything 'is just ME, get on with it'

However, having been referred to a cfs/ME clinic and had someone come and visit me, a few of my symptoms seemed to her a bit 'not ME' so she has urged my doctor to do other tests e.g. Heart traces they couldn't be bothered to do before so that's in the pipeline (part of me is completely scared that something *won't* be found wrong with these various areas and heart...as after nearly 30 years it would be lovely to find something at least treatable in this malfunctioning body of mine lol) so there are at least some clinics that are bothered with things other than cbt and GET to ameliorate the situation, hopefully after the whole PACE fiasco has run out of steam we can start getting some more funding and answers, too late for some of us though as we saw from the many people who were commemorated last week

The only time an ambulance has been called I was unconscious so I had no say in the matter. Otherwise....nah not really much point is there?

Thanks again from the bottom of my heart ♥️