Welfare Worries: Expert quotes to explain that GP's & Hospital can't help Severe Bedridden patients

[Luelma]

WELFARE ANXIETIES: I urgently need some really robust, pithy quotes that I can print off because I cannot speak - so that I can explain to PIP health visitor and other welfare assessors that my GP & the NHS (neither who i've had contact with for about 3 years)have no answers; are actively more harmful than helpful and that hospital is the very worst place for me. And that lack of 'proof' of many symptoms
does not mean I (we) are not incredibly seriously ill.

I'm freaking out about various welfare needs and for ticking assessments (sure I'm not alone). If kind people can deal with reading my verbose personal details below and have any further helpful short, pithy evidence-based expert quotes I can print off to point to when I'm visited or include in correspondence ; council plans for more financial assessments so that the patient has to pay considerably more; that would be most welcome.
Below is a list of three chief things I'm wondering if anyone can help with:-

1.) Mainstream conventional medicine does not currently have answers, treatments or medications developed or effective for Severe ME/CFS.
I'm after short punchy quotes from recognised mainstream clinicians and researchers from the most universally recognised and respected hospitals and,or universities, that drive home, clearly, this fa ...(and, if it exists, that the reason for this is due to lack of research.)

2.) No medications; biophysiological treatments for Severe ME/CFS. Am I correct that aside from GET & CBT there are no freely, widely available prescription medications specifically for ME/CFS; only medications for symptom management which does not speak to underlying root causes; biological dysfunction. Again any quotes from experts of authoritative sources on this wld be appreciated.

3.) Expert quotes stating that hosptial can cause real and further unbearable sufferingn to Severe Bedridden ME/CFS patients. If we are to improve - this must be done from home. I'm need of any brief, powerful quotes from expert authorities (really needs to be mainstream as excellent evidence from clinicians working outside the mainstream can be easily dismissed) that clearly state that hospital is NOT the best place for Severely ill CFS patients and that there is a very real danger of further (unbearable) suffering and irrevocable decline taking place even if one is moved in an ambulance etc etc

(I have a little salient info from the hummingbird foundation http://is.gd/lNdsMq) but I need more that speaks to this important point! (I've written a lot below but I speak more to this where I've capitalised:- GP & HOSPITAL FEARS

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Some background: I am 24/7 bedridden (ironically I went from 23hrs a day bedbound to never being able to leave a few days after pushing myself to complete the PIP form which I had to go to extraordinary lengths to be granted an 'extension' on.)

I cannot speak at all due to chronic severe sore throat & am only able to scrawl notes on a pad and hold them up to be read if I am ' well' enough (this gets tiring v quickly & also one cannot hastily scrawl even one eighth of what one would ever want to say if one cld speak) especially to someone with zero understanding of ME/CFS

No-one can speak on my behalf and no-one has the first clue about all my symptoms and needs except for me. I have a polish assistant (with very bad English) and other people who do different things (eg someone who changes my sheets - when I'm able to cope and/or am not in throes of agonising migraine or gut pain attack). All this was written in my form but I know we are essentially 'on trial' when begging for welfare mercy; plus becoming permanently bedridden has heightened needs which I'm too exhausted to type up cogently and get printed off ready for the dreaded visitor.

I live with my 74 yr old father and my very survival is contingent on his being able to bring me food I have prepared off site (he is domestically illiterate and could not cope with my very specific narrow dietary needs (NB my primary and pre-existing lifelong problems are severe and utterly unique gastro problems and it's 50+ hour suicide-inducing gut pain attacks that are the hell above all other hells of my condition - they don't respond to any opiate or other pain meds or therapies. )

My father has very severe osteoarthritis and badly needs a third hip replacement but due to my ever changing daily eating capabilities and needs and timings; our rural location and other factors; there is no way care for me could be found whilst he was out of action. However my recent deterioration has made his arthritis much worse (he now has a crutch.) He cannot cope with the gravity of my illness and can often take his very understandable fear and overwhelm out on me; and the emotional toll this has been taking on me has been acute.

I'm trying to think up new ways to lessen his load and need to apply for more assistant care from the council but was recently horrified by a letter saying I'll have to have a new financial review and make higher financial contributions.
This is stressing me too (I know many are in far worse strait than me so I am mindful of seeming too 'moany' ...but..

I simply have no choice but to get well because of my father and, of course, because spending 24/7 alone in bed with probably an average of under ten minutes human interaction a day and enduring all the inhuman symptoms is hell!

I've a professional background in health and nutrition research; have worked with over 85 practitioners based on every continent escort Africa; have seen many gastroenterologists (had all the tests) pain consultants, a haematologist and more but I've had no contact with my GP, or anyone in mainstream medicine for years and for the past year have not been a patient of any health professional at all.

GP & HOSPITAL FEARS
I'm terrified of being made to have my GP visit because, even when I could speak a bit; his derisive, frustrated treatment was really scarring (I've had nightmares about him and I wasn't nearly so disabled back then.)
"What are we going to do with you" uttered with an air of profound exasperation highlights the tenor and tone of his treatment. He is obsessed that I "gave up on mainstream" medicine (and even asked for the date I turned my back on it.)
Dr Myhill (British private GP and CFS specialist) was my first doctor but all her brilliant letters were never taken seriously though prescriptions for things she suggested I try were granted.

My GP thinks I've been inculcated to detest all things mainstream rather than the more nuanced truth which is that I've tried every darn drug I've been offered for this illness (of course only for symptom management) and responded to none. Other than maybe trying Ampligen (which I'm unclear would ever be prescribed) I know my route to recovery will not be paved with mainstream pharmaceuticals.

I was with another GP for a while who was obsessed with my being psychiatrically ill (I'm not ) and my current GP's magical answer is just to send me to hospital and have me stay there as though by just being there the holy grail problem and treatment will be found.

I now have severe POTS (and really cannot sit up for long, or at all. At worst I struggle for breath lying immobile and prostrate where I simultaneously feel like I'm having the life force vacuumed out of me on a loop: a living death. It clicks in a lot of nights and at worst for days or weeks on end.
I am in no doubt I would enter a permanent living death state if I were merely moved down the corridor let alone out the house and to hospital; where I'd not have access to the foods I need or the silence necessary to try and sleep at odd hours because my night are so broken. I would undoubtedly enter more suicide inducing gut pain attacks and could not cope.

I also cannot "prove I have POTS" as really discernible cardiac symptom only kicked in after a major decline in summer 2014 by which time I felt too ill and too stressed out to have my GP visit me and have a futile appointment with a cardiologist arranged - something especially dreaded as, by then, I had all but lost the ability to speak and "defend" myself.

ON AVERAGE (!!) HOW MUCH DOES IT COST TO JUST TO TRY AND GET WELL FROM BEING VERY SEVERE
I've spent 13 months putting together a comprehensive health action plan; trying to sort out the best buttons to push without triggering a worsening and finding a way of financing it. I've not totted up the cost but it will run to many thousands, yet the small amount of savings I still have left will be required now simply for me continue to survive by paying for more of my care needs.
How are any of us to ever get well if we're not multi-millionaires?

I know many are a great deal financially worse off than me but how can we fund our basic right of attempting to regain a viable, pain-free life with any quality at all, if we're to be asked to pay even more for the most rudimentary basic survival care. My council is holding meetings which I obviously can't go to about this, but I am so shattered by symptoms I can't concisely formalise or relay just why - by being forced to pay a lot more for essential survival care - one is being robbed of a chance to escape the purgatory of this illness....again, any suggestions as to what to say much welcomed.

I feel very exercised about this and if I could just improve a bit I would like to write about this. Ideally we need to collate good independent evidence that details just how much - on average - we need to spend on a monthly basis on treatments aimed at giving us a hope of recovery.

(as these are often classed as supplements it's hard for officialdom to take these seriously) to try and recover.

 

[ahmo]

I don't have any additions for you. You may get something you can use from one of Jaime's 2 excellent docs.
http://forums.phoenixrising.me/inde...cephalomyelitis-a-multi-system-disorder.1814/
http://forums.phoenixrising.me/inde...cephalomyelitis-a-multi-system-disorder.1814/
Myalgic encephalomyelitis: a multi-system disorder Myalgic encephalomyelitis, or ME, is a disorder classified as a neurological...


http://forums.phoenixrising.me/inde...t-md-do-spiritual-advisor-family-friend.1832/
or : an even shorter note for your actually-interested doctor To give you a sweeping generalization of the currently competing...

 

[alex3619]

Something short you might be able to glean citations from:

www.nap.edu/html/19012/MECFScliniciansguide.pdf

The full IOM (Institute of Medicine) report is much longer.

 

[spacyrov]

From the National Institutes of Health:

The National Institutes of Health is strengthening its efforts to advance research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a disease for which an accurate diagnosis and effective treatment have remained elusive. . . .

“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging,” said NIH Director Francis S. Collins, M.D., Ph.D. “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”

. . . ME/CFS is an acquired, chronic multi-system disease characterized by systemic exertion intolerance, resulting in significant relapse after exertion of any sort. The disease includes immune, neurological and cognitive impairment; sleep abnormalities; and dysfunction of the autonomic system, which controls several basic bodily functions. These symptoms result in significant functional impairment accompanied by profound fatigue. Additional symptoms may include widespread muscle and joint pain, sore throat, tender lymph nodes and headaches. Effects of the illness can range from moderate to debilitating, with at least one-quarter of individuals with ME/CFS being bedbound or housebound at some point in the illness and many individuals never regaining their pre-disease level of functioning. Because the pathology of ME/CFS remains unknown and there is no test to diagnose the disease, studies to date have used different criteria for diagnosis, which has limited the ability to compare results across studies. Additionally, many of the published studies are based on small study populations and have not been replicated.

From a 2014 article in Stanford Medicine magazine:

Montoya is one of only a handful of clinician-researchers who accept ME/CFS patients, and he currently has a waiting list of about 150.

Back in 2005, while attending a conference on toxoplasmosis in Paris, Montoya told his mentor that he wanted to research ME/CFS. His mentor scoffed at the idea, pointing to a homeless person lying in a Parisian gutter.

“That’s going to be you if you go into chronic fatigue research,” the mentor told him.

The hard truth is that most medical research labs rely in large part on U.S. government funding, and the ME/CFS research budget is insufficient to support a typical university research lab.

The National Institutes of Health, the largest funder of medical research in the United States, allocated only $5 million for ME/CFS research in 2013. (To put this in context, the annual NIH research budget for multiple sclerosis, with 400,000 sufferers, is $112 million.) The reasons behind this underfunding are complicated.

One factor is that the NIH funding process favors well-defined diseases that fit neatly into medical specialties like cardiology, cancer and neurology. Most of these medical societies have organized lobbying efforts, sometimes backed by pharmaceutical or medical technology companies. Another factor is that collectively ME/CFS patients are too sick to organize, raise money and lobby for research dollars. And then there is the stigma associated with the condition; some NIH grant reviewers are reluctant to fund research because they believe that ME/CFS is a psychosomatic, “all in the head,” disorder. (To remedy this, the NIH recently created a special emphasis panel so that researchers familiar with the condition review grant applications.)

And here are two sites illustrating how hard it is to get funding for ME/CFS research. Both sites ask(ed) for donations.

The End ME/CFS Project: a collaborative research project led by world-renowned geneticist Ronald W. Davis, PhD, professor of Biochemistry and Genetics at Stanford University School of Medicine.

The Microbe Discovery Project (crowdfund complete): research project led by world-renowned microbe hunter W. Ian Lipkin, MD, John Snow Professor of Epidemiology at the Mailman School of Public Health at Columbia University, Professor of Neurology and Pathology at College of Physicians and Surgeons at Columbia University, and Director of the Center for Infection and Immunity at Columbia University.

 

[spacyrov]

Some quotes I pulled for you from the Institute of Medicine's report on ME/CFS. Some of it is redundant so just pick out the ones you like most. I highlighted in purple the quotes I personally liked best.

Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004). In multiple surveys, 67 to 77 percent of patients have reported that it took longer than 1 year to get a diagnosis, and about 29 percent have reported that it took longer than 5 years (CFIDS Association of America, 2014; ProHealth, 2008). Seeking and receiving a diagnosis can be a frustrating process for patients with ME/CFS for several reasons, including a lack of understanding of diagnosis and treatment of the condition among health care providers and skepticism about whether it is in fact a true medical condition. Less than one-third of medical schools include ME/CFS-specific information in their curriculum (Peterson et al., 2013), and only 40 percent of medical textbooks include information on the condition (Jason et al., 2010). Some studies on awareness of ME/CFS have found high awareness among health care providers, but many providers believe it is a psychiatric/psychological illness or at least has a psychiatric/psychological component (Brimmer et al., 2010; Jason and Richman, 2008; Unger, 2011). ME/CFS often is seen as a diagnosis of exclusion, which also can lead to delays in diagnosis or misdiagnosis of a psychological problem (Bayliss et al., 2014; Fossey et al., 2004). Once diagnosed, moreover, many people with ME/CFS report being subject to hostile attitudes from their health care providers (Anderson and Ferrans, 1997; David et al., 1991), as well as to treatment strategies that exacerbate their symptoms (Twemlow et al., 1997).

The primary message of this report is that ME/CFS is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”

Patients with ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease (Jason and Richman, 2008; Twisk, 2014). Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being house- or bedbound by their symptoms. Many patients feel unable to meet their family responsibilities and report having to reduce their social activities (NIH, 2011). However, these data include only patients who were counted in clinics or research studies and may underrepresent the extent of the problem by excluding those who are undiagnosed or unable to access health care (Wiborg et al., 2010).

Because the pathology of ME/CFS remains unknown and there is no diagnostic test for the disorder, most of the existing diagnostic criteria for ME/CFS were developed through the consensus of experts.

A lack of replication and validation in many studies limits the ability to assess the study findings critically. Few attempts have been made to follow up on or replicate intriguing findings in the literature to date.

The current evidence base is insufficient to determine whether the illness defined by existing ME/CFS criteria or by the new criteria proposed here has subtypes or is actually a collection of potentially distinguishable disorders. . . . Today, many clinicians and researchers agree that ME/CFS is a heterogeneous disease that may be composed of subgroups (Bassi et al., 2008; Carruthers et al., 2011; Jason et al., 2005; May et al., 2010). Yet in practice, large studies that include individuals with diverse symptoms and yield diverse findings are needed to identify subgroups reliably, and few such studies have been conducted. Nor is there adequate evidence to enable comment on the manifestations of ME/CFS across the life course . . .

While there was sufficient evidence with which to carry out the first steps of its task, the committee was struck by the relative paucity of research on ME/CFS conducted to date in many areas related to this disorder. Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted. Thus, the committee was unable to define subgroups of patients or even to clearly define the natural history of the disease. More research is essential.

. . . the lack of awareness and continuing skepticism among many health care providers of ME/CFS as a legitimate physical illness. Indeed, the main barriers to appropriate and timely diagnosis of ME/CFS appear to be primarily attitudinal rather than knowledge based. A study published in 2010 by CDC found that 96 percent of health care providers were aware of ME/CFS and were able to recall accurately some symptoms associated with the 1994 Fukuda definition (Brimmer et al., 2010). Yet the same study also found that a significant portion of providers had doubts and misconceptions about the illness. Some providers still were expressing the belief that “people with [ME/CFS] are just depressed” and 30 to 43 percent link the illness to high socioeconomic status or pre-illness“competitive/compulsive” personality traits. . . . Similarly, a 2011 study found that 85 percent of health care providers still believed the illness was wholly or partially a psychiatric rather than a medical one (Unger, 2011). Numerous studies also have documented skepticism among clinicians about ME/CFS being a distinct clinical entity (Bayliss et al., 2014).
Other attitudinal barriers include physicians’ low self-efficacy and lack of positive outcome expectancy with respect to ME/CFS. A recent CDC sponsored Medscape continuing medical education program found that a high percentage of the more than 2,000 respondents were “not at all confident or only “somewhat confident” about making a diagnosis of ME/CFS (Harmon et al., 2014). In a separate study, almost 70 percent of clinicians who had previously diagnosed patients with ME/CFS still believed the illness to be more difficult to diagnose than other illnesses (Brimmer et al., 2010). Finally, some physicians, despite being somewhat knowledgeable about and believing in the legitimacy of the condition, may not share those thoughts with their patients because of the mistaken belief that giving them a diagnosis of ME/CFS will “inhibit a patient’s motivation to get better” as it prevents them from engaging fully with the existential conditions of their life, which is what they cannot cope with (Brimmer et al., 2010, p. 10).

Research to date illustrates the many challenges of assessing disability in adults with ME/CFS, an illness for which cause and cure are unknown. . . . The call for objective markers of impairment that correspond to the unique symptom complex of ME/CFS patients is prudent and indicated given the lack of consensus that persists in the research literature regarding assessment of recovery.

Similar to the literature on treatment in ME/CFS patients, there is little evidence on the efficacy of interventions in ME/CFS patients with respect to function and disability.

Consistent with the findings of the systematic review of Ross and colleagues (2002, 2004), studies reviewed by Taylor and Kielhofner (2005) provided no evidence regarding the efficacy of employment rehabilitation, such as CBT and/or graded exercise therapy. Variation in methodologies, outcome measures, subject selection criteria, and other factors precluded drawing conclusions about the efficacy of interventions designed to enable ME/CFS patients to return to work.

ME/CFS clearly impairs patients’ ability to function on a regular basis both cognitively and physically. This impairment often confines patients to their homes or beds and may severely restrict their ability to attend to their jobs or schoolwork, among other responsibilities and basic needs.

It's hard to find quotes from mainstream experts about severe bedridden ME/CFS patients because most of them only see the ones who are functional enough to make it into their clinics. But you might want to look up Ronald W. Davis, PhD (who I mentioned earlier), as his son, Whitney Dafoe, has a very severe case of ME/CFS. He had to go to the hospital for a procedure a couple of months ago and his sister wrote a brief message about it on Facebook.

Last week my brother, Whitney, had to go to the hospital for a surgical procedure. He needed to be transported by ambulance with extreme care and was put into a TB isolation room to keep him in as calm and quiet an environment as possible.

Hope this helps.