The psychological impact of dependency in adults with CFS

Posted on 04/26/2016 by wames

Research abstract:

Chronic fatigue syndrome/myalgic encephalomyelitis can limit functional capacity, producing various degrees of disability and psychological distress.

Semi-structured interviews explored the experiences of adults with chronic fatigue syndrome/myalgic encephalomyelitis being physically dependent on other people for help in daily life, and whether physical dependency affects their psychological well-being.

Thematic analysis generated six themes: loss of independence and self-identity, an invisible illness, anxieties of today and the future, catch-22, internalised anger, and acceptance of the condition.

The findings provide insight into the psychological impact of dependency. Implications for intervention include better education relating to chronic fatigue syndrome/myalgic encephalomyelitis for family members, carers, and friends; ways to communicate their needs to others who may not understand chronic fatigue syndrome/myalgic encephalomyelitis; and awareness that acceptance of the condition could improve psychological well-being.

The psychological impact of dependency in adults with chronic fatigue syndrome/myalgic encephalomyelitis: A qualitative exploration, by AM Williams, G Christopher, E Jenkinson in J Health Psychol. 2016 Apr 19. pii [Epub ahead of print]

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Immune system dysfunction in ME/CFS as a potential biomarker

Posted on 04/25/2016 by wames

Bateman Horne Center blog, by Dr Suzanne Vernon, 15 April 2016: Uncovering Biomarkers – Fcg receptors in ME/CFS

Uncovering Biomarkers – Is protein dysfunction a risk factor for the development of ME/CFS?

The Bateman Horne Center (BHC) is determined to bring ME/CFS and FM into the mainstream by focusing on the discovery of biomarkers.

Biomarkers will improve diagnosis and treatment and put us on a pathway to a cure. It is the powerful combination of an active and specialized medical center of excellence with an innovative research program, under one roof, that allows us to most effectively focus on this work.

To achieve our goal of finding a biomarker we are recruiting a Research Ready Army of well-defined patients eager to participate. Our Research Ready Army helps drive the discovery of biomarkers by participating in a comprehensive clinical evaluation, answering questions, and providing blood samples. This valuable and secure data is in turn shared with top scientists – each working on different potential biomarkers – like Dr. Isabel Barao, a cancer immunologist and ME/CFS researcher at the University of Nevada, Reno (UNR).

In this guest blog, Dr. Barao explains the research she is doing to uncover potential immune system dysfunction in ME/CFS as a potential biomarker.

Fcg receptors (FcγRs) in ME/CFS,  by Dr. Isabel Barao

A number of symptoms of ME/CFS are linked to immune dysfunction. An Fc Receptor (FcR) is a protein found on the surface of certain cells that contributes to the protective functions of the immune system. I hypothesized that FcR protein dysfunction is a risk factor for the development of ME/CFS.

In a healthy immune system, Fc Receptors (FcRs) bind to antibodies that are attached to infected cells or invading pathogens, stimulating other certain cells to destroy the infected ones. There are several different types of FcRs, each one classified by the type of antibody they recognize. Those that bind the most common class of antibody, IgG, are called Fc-gamma receptors or FcγRs.

FcγRs are responsible for the effective control of both B cells (a type of white blood cell) and natural killer cells (NK cells), a critical part of a person’s immune system. NK cells are central to generating appropriate responses to infection and preventing autoimmunity. When this balance is lost, there is an increased susceptibility to cancer, autoimmunity, and infection. In contrast, optimal FcgR activity facilitates effective disease resolution and response to immunotherapy. The underlying genetics of the FcgR gene family are a central component of this balance.

Because a number of symptoms of ME/CFS are linked to immune dysfunction, I have hypothesized that FcγRs are risk factors for the development of ME/CFS. My research has been focused on the biology of lymphocytes and in the design of effective immunotherapies to treat disease. NK cells are the first defense against viruses and cancer and NK cell deficiency occurs in ME/CFS. Patients have an increased susceptibility to infections and increased risk of developing non-Hodgkin lymphoma.

I am trying to determine if there is abnormal NK cell functioning in ME/CFS patients. NK cells express FcgRs and these receptors recognize and bind to the antibody which has bound to the surface of an infected or cancer cell.  Once the FcgRs bind to the antibody, the NK cell is activated and releases lytic proteins, which causes the death of the infected or cancer cell. This is called antibody-dependent cell-mediated cytotoxicity (ADCC). ADCC capability of NK cells in ME/CFS patients is unknown.

In collaboration with the Bateman Horne Center, the National Cancer Institute (NCI) at NIH, and Roche Pharmaceuticals, my UNR colleagues and I are examining mutations in NK cells of ME/CFS patients and their associations to ADCC capability and disease pathology. The team is committed in defining ME/CFS clinical subtypes through FcgRs immune profiling and in developing immunotherapies to treat the disease.

This research has been supported by NIH (CTR-IN 1U54GM10444-2 and R21AI117491), Simmaron Research, Inc., Solve ME/CFS Initiative, and private donors. The first manuscripts are in preparation.

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Methods of evaluating ME interventions

Posted on 04/25/2016 by wames

Research abstract:

INTRODUCTION

The current study provides data from two patients with myalgic encephalomyelitis, who charted several of their symptoms over time.

CASE PRESENTATION

Each patient charted domains that were relevant to them, and they were attempting to assess the effects of specific interventions. An AB operant design was used for both participants. The findings indicate that by charting symptoms on a regular basis, it is possible to determine if a particular intervention is helpful and effective.

CONCLUSIONS

This methodology is easily available to patients and clinicians so that they can have a clearer idea of the effectiveness of interventions for managing some symptoms of ME.

The Use of Operant Methods to Evaluate Interventions for Patients With Myalgic Encephalomyelitis, by Leonard A Jason, Elizabeth K Kidd, Abigail A Brown, and Stephanie McManimen, Rachael Korinek and Joey Tuan in Middle East Journal of Rehabilitation and Health   [published online 27 April 2016]

 

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Women assess quality of healthcare services in Norway

Posted on 04/22/2016 by wames

Research abstract:

Objective: To test the association between self-rated health and self-rated degree of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and CFS/ME patients’ assessment of quality of primary care, specialist care and coordination of care.

Design: Cross-sectional study.

Setting: Self-reported questionnaire data from women members of The Norwegian ME Association obtained in 2013.

Participants: 431 women with CFS/ME aged 16–73 years.

Main outcome measure: The participants’ assessment of quality in primary care, specialist care and in coordination of care (good/very good or poor/very poor). Main explanatory variables: self-rated health and self-rated degree of CFS/ME.

Results: Quality of care was rated poor by 60.6% in primary care, by 47.7% in specialist care, and by 71.2% regarding coordination of care.

Poorer self-rated health increased the probability of rating quality in primary care poor, particularly among women 40 years and over (OR 2.38, 95% CI 1.63 to 3.49), women with university education (OR 2.57, CI 1.68 to 3.94), and owing to less frequent general practitioner (GP) visits (OR 2.46, CI 1.60 to 3.78).

Poorer self-rated health increased the probability of rating quality poor in specialist care (OR 1.38, CI  1.05 to 1.82), but not in coordination of care. A more severe CFS/ME was associated with a higher probability of rating quality in primary care poor (OR 0.61, CI 0.38 to 0.93). Frequent visitors and those with a long GP relationship were less likely to report primary care quality as poor.

Conclusions: A large proportion of women with CFS/ME rated quality of care poor/very poor in primary care, specialist care and in coordination of care. The dissatisfaction was higher for primary care than for specialist care. Overall, poorer self-rated health and a more severe CFS/ME were associated with lower quality scores in primary and specialist care, but not in coordination of care.

Healthcare services, as assessed by women with CFS/ME, do have a large potential for improvement.

How do women with chronic fatigue syndrome/myalgic encephalomyelitis rate quality and coordination of healthcare services? A cross-sectional study Anne Helen Hansen, Olaug S Lian in BMJ Open 2016;6:e010277  [Published 4 April 2016]

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ME and rituximab in Notodden Norway

Posted on 04/21/2016 by wames

Hanne Thurmer

ME-foreldrene blog: Lecture by Hanne Thürmer, Notodden. RituxME and current development, 13 April 2016

Lecture by dr Hanne Thürmer, Notodden Hospital Original in Norwegian/Norsk original

From a lecture given at the local department of the Norwegian ME-association in Notodden, avd Telemark, Norway, February 8th 2016.
Lecturer: Hanne Thürmer, dr. med at Notodden Hospital.

Dr Hanne Thürmer is a senior consultant in the field of internal medicine and cardiovascular diseases, and has been involved in ME since 2009. She is also a member of the Norwegian ME-association’s Board of Medicine.  Here are our notes from the lecture.

The slides from this evening in Norwegian: sykdomslære ME jan 2016

Ann Kristin Bakken of the ME-association in Notodden welcomed everybody to this evening at LMS Notodden Hospital.

ME/CFS/SEID Status 2016

This illness has several names. SEID might be the most accurate this far.  It originates from the USAs National Institute of Medicine. [See their report from 2015]

Notodden Hospital has had a clinic for ME-patients since 2009.

In Notodden it all started with a young and very sick patient whom the doctors at the hospital tried to help.  The doctors got curious and tried to learn more.  This way they increased their knowledge about ME and Notodden became one of the larger Norwegian clinics.  At Notodden we use the Canadian Criteria and the International Consensus Criteria.

Notodden has had approx 400 patients since 2009 [Norwegian].

Patients are mostly female (80 %).
They have a small increased tendency to get a rare disease called B-cell lymphoma.  The doctors think the B-lymphocytes are important.

The doctors notice that there is a tendency that ME-patients have more autoimmune diseases like coeliac disease, arthritis etc.  POTS is quite common, the patients have body systems that are not under control.  Symptoms for POTS are, among others, a drop in blood pressure and rapid pulse. This is a symptom of the body not being able to regulate itself, not the cause of ME.

The patients are often sensitive to alcohol and their reactions to medications are not normal.

We still do not have well established knowledge about this disease, but a there is a lot developing now.  We have a rush of new data and new theories, a lot is tried and discarded underway.  It is very difficult to be a patient – and it is not too easy being the doctor either.

Fatigue is the symptom best known.

Fatigue gives the patients reduced ability to start and/or maintain an activity.  A lot of patients start doing something that they are not able to finish.  The patients find it difficult to concentrate and to keep up their attention level.  Their cognitive function is reduced.
Fatigue is not visible and not measureable.  Fatigue is not the same as sleepiness, decondition, depression and so forth.

ME/CFS is a lot more than just fatigue.

«In meeting the patients, we try to grasp just how exhausted they are, but it is really difficult because most often they are too exhausted to even remember themselves! », Thürmer says.

The illness is real, it is somatic, it is recognisable, and it can be separated from other conditions.  A probable cause is not established, and reliable tests do not exist, yet. As of today, the diagnose is based on criteria and we have to rule out any other disease. We have  20 different sets of criteria, and some of them are almost the same!

SEID might be able to connect the different sets of criteria. New knowledge might give us better tools for diagnosis. We can still examine effects of treatments even though the cause of the disease is still not discovered.

Unfortunately, not all doctors and caseworkers are updated.
It is easier to relate to something visible, and meeting unknown conditions can be challenging – the professional caseworker might become unsecure and unprofessional?
These are common human reactions – to think that this cannot exist, this is exaggerated, this is somebody else’s problem, somebody else has to deal with this.  And this in turn makes the patients feel rejected.

NB! Important advice to ME-patients: Never go to meetings alone!

The name
Mostly, the different names of this illness are descriptive.  The name Myalgic Encephalomyelitis was launched by the Lancet in 1956, CFS (another descriptive name – chronic fatigue syndrome) came later. The illness has been called neurasthenia and soldiers heart. We are quite certain that Charles Darwin and Florence Nightingale suffered from ME, reading contemporary descriptions.

ME can be epidemic.
SEID is the most recent name, Systemic Exertion Intolerance Disease.
Again, this is a descriptive name.  Unfortunately, it is a bit difficult to translate to Norwegian.  The concept of the disease being systemic is very important!

How many people suffer from ME?
The numbers are unsure but we operate with around 1–2 per 1000 people, which means 170–340 new cases per year here in Telemark [county].

ME is graded in four categories of severity
1: mild, self manageable, needs to rest.  Not well and healthy.
Memory-problems occur already at this mild level.
2: moderate, needs to rest every day
3: severe, big memory-problems, mostly resting.  Housebound.
4: very severe, dark room and so forth. This is rare, fortunately.

The symptoms are diverse
We see cognitive impairment – memory, concentration, attention. Of the patients who participate in the RituxME-study and come regularly to our clinic, we always have several patients coming at the wrong time, forgetting their appointment.  It happens so often; the staff has routines to handle this.

The patients have a physical malfunction like weakness, exhaustion and they are easily worn out.
They also have a neurological failure
– other: sleep issues, uneven body temperature.
The patients are asked to grade their symptoms on a scale from 1-10, and quite a large number scores high.

What do we agree on?
We have some kind of disposition, and then something happens that sets it off.  The illness changes both the immune system and other organs.
The patients experience that they get worse both by physical and psychological strain.
Exercise makes almost all the patients worse. ME is not a psychiatric diagnosis, but psychological reactions can make the illness worse.
A lot of people try to rest the illness away, but total bed rest for long periods does not help them to improve either.
There might be a heritable/genetic vulnerability to ME, but most patients are the single one in their Family.

Criteria for diagnosis
The diagnosis is made by one of the sets of criteria. Here at Notodden Hospital, we use the  Canadian criteria, we have a fairly homogeneous group of patients. All other possibilities of illness must be ruled out. Often it takes a long time to be diagnosed, as we still lack an accurate test for ME.

Diagnosis can be made by your GP [children need a specialist], but before applying to benefits the welfare system in Norway (Nav) often require that the patient see a specialist.

Query: «Is there a tendency of over-diagnosis by the GPs? » – We do not know this, it is hard to say. It is not a good thing if all tired patients get a diagnosis of ME …

Illnesses that need to be ruled out before the patient can get diagnosed with ME are infections, immune diseases, it is important to check the metabolism, cancer and other serious illnesses, celiac disease, deficiency diseases, abuse of pills and other narcotics, depression etc.

Hallmarks
The patient has previously functioned just fine in everyday life, with a job, and recreational activities – more often than not plus a little extra activity in the community.  Then something happens to some, maybe an infection? Then we see an after-condition that we do not understand, that lasts for year after year. The patient is not able to restart, exercise leads to relapse, the doctors mistrust the patient, the welfare system mistrusts the patient, and this is frustrating and depressing.

Cognitive therapy does help in somatic disease – we use the technique in all other groups of patients to help them rid themselves of feelings like guilt, low self esteem, it is important to build confidence and pride to get a little bit better.

More on treatment
Long cures of antibiotics have been tried out, but on average, it doesn’t help.  There are disadvantages to using antibiotics for long periods of time so one has to be careful. Long cures are to be avoided. EryMax (antibiotic) and macrolides can be helpful –in the short run. In this case it is not the antibiotic itself that is helpful, but another function (nitrogen).

Patients need to be careful; there are a lot of people who want to make a profit on all kinds of tests and cures that are not reliable.
Some make a lot of money on these tests and we cannot see that this is useful for the patients, but we do understand that some patients are desperate and willing to try everything.

There has not been found fungus, virus or bacteria in the bodies of ME patients.
On the other hand the function of the B-lymphocytes is a possible contributing factor (this is a theory). B-lymphocytes are a type of white blood cells and they are a part of the immune system.
FODMAP elements in diet can make the patient worse. Irritable Bowel Syndrome (IBS) is the ME of the bowel and is often found in the same patients.

LDN helps some; one can try out starting at 3 mg then increase, stop and start again (some patients improved so much on LDN that they didn’t want to participate in RituxME). This treatment is not documented. It looks like it is mostly helpful if the patient has a lot of pain issues.

Vitamin supplements. B12, D-vitamins. Some, as in the Marshall Protocol, say that one should run the levels all the way down! It is better to have an appropriate level of vitamins and minerals.

Nitroglycerin can be of help, we are testing this in the study of the endothelial function on a blood vessel in the patient’s arm. It helps some patients while it gives other patients a headache.  This is something that can be tested, and it is not expensive!  It is a spray under the patient’s tongue.  In some patients the effect lasts for 3 days! Usually, the effect passes within a few minutes, but the body of ME-patients do not react normally.  It is not dangerous to try out nitroglycerin.

Gammanorm, supplement of immunoglobulin: we need a serious study of this.  Some find that it is helpful, while others get worse.
Gammanorm-treatment has somewhat of the opposite effect of what the Rituximab-study is testing.
(The reason for this might possibly be that there is an imbalance in the immune system and maybe several types of ME. Maybe some patients produce too much immunoglobulin, while others produce too little? We cannot predict this yet, but we might know a little more by the fall of 2017.  Some patients get every disease that goes around, and some get nothing.  This indicates at least two types of ME. In any case this certainly has something to do with the immune system.)

Rituximab and cyclophosphamide are immunosuppressants or immune modulating agents. There are ongoing studies on the effect on ME-patients in Bergen (Haukeland hospital) and in several other hospitals in Norway.

Scientific basis for today’s treatment
It is important to avoid crashing; the patient needs to be stabilized before he or she can get better.  The head needs to be in charge of the level of activity.  One does not get well this way, but one can get a bit better.  Stabilize on 70 % of available energy.  [Do not use more than 70% of the energy available (editor)]

Query: «Where does the extra energy come from? » – The patients often have a strong will.  You just don’t back down.

Query: «But is it adrenaline? Cortisol? » – Everything is different and more undulating in patients with ME, it is difficult to measure but it does vary in healthy persons as well.

Perpetuating factors can be outer and inner stress, too much activity, diet, too little relaxation …

It is important to stop all treatment that is not working.  It might be antibiotics, hair-testing, expensive supplements, total bedrest, and exercising without customization…

ME-patients must be in control, live controlled, the frame is limited.
The patients need to adjust according to their level of functioning.
There is a big individual difference in how much activity that is tolerated.  One method can be to keep track of reactions 2–3 days after any kind of activity and then evaluate if this was on the right level.  It is very important to stay within the limits.

How do the children progress?
We are not as positive as we used to be. These are figures from Dr.
Bell in Lyndonville, 25 years after disease onset: 40 % of patients are ok, 40 % are quite good and 20 % remain ill.
Those who are very poor or have been sick more than 5 years rarely recover fully. Recovery is rarer the worse the child has been and the longer the child has been sick.
[Added from the slide:] They need to live highly regulated and “level”, and adapt school, family and socializing to M.E. all the time.

How do the adults progress?
Almost no adults recover completely, one must stabilize. Most are not able to get back to regular 100 % jobs and have a normal everyday life. Patients can live a little better if they are careful not to “crash”. We see that courses, initiatives and activities beyond their abilities (for example those imposed by the Norwegian welfare office
(Nav)) make them worse. Bad conscience makes patients worse, that’s no wonder.

Query: «Does the disease affect age deterioration?» – We do not know, but life expectancy  are not shorter among people with ME.

Function level
To figure out the level of functioning, we can ask questions like – Do you have to choose between taking a shower and having breakfast? etc.
We use these questions not to miss what the actual functional level of the patient is. The level of functioning is usually very low! Many patients forget how sick they really are. It’s awkward for the patients to be reminded of how ill they are. One of the most common coping strategies is to forget how sick you are! This is one of the reasons why you NEVER should go alone to meetings, for example to The welfare office (Nav). Take someone with you, do not say yes to anything you know will go wrong. You must complain, and complain again if they make wrong decisions. You can get help from the ME-Association or a lawyer. Get help to file a complaint. The problem is that Nav have no alternative to “working trials”. The Nav in the county of Telemark will soon attend a course on ME.

We have tried to measure the ME patients’ fatigue with a bicycle exercise test for two consecutive days, where we monitor the level of lactic acid, which turns out to be disturbed. The problem is that the test is too hard on the patients, it is obvious that there is something wrong with them. Patients are bedridden for months afterwards, so the test cannot be used on the more severe cases.

One theory we are testing is whether the endothelial organ may be damaged:
We measure the blood vessel in the arm, using a blood pressure monitor and look at the expansion of the blood vessels in patients.
Nitroglycerin allows the blood vessels to react normally.
This is a promising test, but not unambiguous, either. In some patients it is very obvious and unusual.
In a few years now we are sure to get good tests!

The RituxME study 2015-2017
The story is getting well known. It started with a woman with lymphoma and ME who got much better from her ME when she received treatment for her cancer. This made the Haukeland doctors start testing.
In the first studies 70 % of the patients improved, while 30 % had no changes. These are small studies and few patients.
In the patients who improved, EVERYTHING got better! Not just one symptom, but the whole package. People felt completely healthy. The questions the doctors then asked themselves was: What is happening?
Why did 1/3 have no effect? Could there be subtypes that have something to do with the immune system?
Notodden Hospital is one of the centers where research on Rituximab is carried out [Norwegian].

Rituximab and the RituxME study
Rituximab is a medicine that has been used for a long time on other groups of patients.
In the study intravenous infusion is used.
Rituximab kills all B-lymphocytes, and it takes 3-7 months before symptoms improve. Some patients have years of effect, while some have a relapse after the B-lymphocytes come back.
The pharmaceutical company is working on developing a syringe that can be set in the stomach skin, as some patients presumably must take this medication regularly, throughout life, such as diabetics must take insulin. It already exists as such a syringe for other patients with other diseases.

Presently some of the 32 participants at Notodden [Thürmers hospital] have become much better, but we do not know if they belong to the placebo group or if they receive medicine. We will not know until 2017.

The RituxME study takes place at 5 centers in Norway, and at Notodden we have patients from Risør to Drammen. A total of 152 patients in Norway are included in the study.
The drug has been used for 20 years, but we must find out whether it is safe for this patient group. It destroys the immune system.

Query: «Are there serious side effects?» – MabThera (which is the same as Rituximab) has been used for many years. It’s about the same mortality rate as paracetamol.
Cyclophosphamide is stronger, but it does not give as many side effects and can be given to the most severely affected. (It is being researched in another study at Haukeland, not in Notodden.)

Query: «How will the approval procedure be if Rituximab proves to be effective?» – It’s depends a bit on how clear the effect is. If there still are 70 % who improve, the approval may go quickly. This is easier than if it [the drug] were something completely new.

Query: «What about Rituximab for children?» – Children will have to wait longer, it’s safer for adults. We do not know enough to give clear answers. But we are generally more careful with children because of growth and vulnerability.

Assessment
The GP should be able to provide diagnosis. The physician must be a specialist in general practice. Then it should be okay. Your physician may use a tool for assessment that for instance the one that Notodden Hospital can send out. This is a standard ME-assessment package. We can even send it out via the ME Association also, if desired.

Advice for the future
To get a better life, it makes sense not to wait for miracle cures, they get here when they get here. Try to have some social life, try dieting. Set realistic goals. Note that the classical method of exercise makes you worse and that the right amount of activity for an ME patient is very little!

We at Notodden Hospital train the Nav in the county of Telemark. This does not happen many places, but here in Telemark they are very interested. There is great need for this in Nav, as the caseworkers are very unsecure.

Query: «Is there any connection or resemblance between ME and fibromyalgia? Many have both diagnoses.» – There is a 70 % overlap between ME and fibromyalgia; we think it is impossible to prove whether there are two diseases or just one.
Presumably the ME gives fibromyalgia-like symptoms and then the patient gets both diagnoses.

Remember that what I say today is certainly not right in six months time, and definitely not in 10 years!

Thank you for attending.

____________

This report and translation is published in agreement with Dr. Hanne Thürmer, but the referent takes full responsibility for any wrong citation and misunderstanding.

Short link for sharing: http://wp.me/p3VLNe-SU Please state source if you share unlinked.

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Are people with ME disabled?

Posted on 04/21/2016 by wames

TIPSFORME blog: Are you Disabled?, by Jenny, 15 April 2016

On Twitter there have been some interesting discussions this week about disability identity and ME. I think this is worth everyone with ME thinking about. For most of us ME is enduring, substantial & has a significant effect on our life. These are the very requirements of defining a disability.

Do you identify as Disabled though? I find a surprising number of pwme don’t. I understand this, it took me 10 years to get to that place myself and for most of that time I was working with other disabled people.

There are a number of reasons why: it is emotional for everyone to come to terms with disability and with ME other people don’t tend to label you as disabled; you hope to get better so don’t want to take on a negative self identity; you initially got sick rather than injured so tend to think of yourself as ill (if we have a genetic predisposition does that change this thinking?); sometimes your symptoms are mild and not substantial; we are brought up to think of disabled as using a wheelchair and many of us don’t etc.

Does it matter? I think which conclusion you come to is your personal business and not for me to say. I shouldn’t define your identity for you. However, I think it is important enough an issue to warrant giving it serious thought. Benefits of identifying as Disabled include becoming part of a wider, more powerful community (1 in 5 adults of working age are disabled); taking advantage of disability rights against discrimination; claiming more benefits and disability discounts; contributing to wider debates about what it is to be disabled and making sure pwme are included.

Will you be Disabled when well? Jen Brea made an interesting point this week that even when she’s well she’ll still identify as Disabled. I’d never thought about that before, but I think I’ll be the same. It is important to me to hold onto internal narratives around “when I’m well I will” this seems to somewhat contradict the concept of having a fixed, Disability identity. However, if identity is more of a way of seeing the world, then I won’t lose that when I recover. ME has changed me. I won’t be the person I would have been without it. Just as a queer person doesn’t lose the knowledge of a marginalised viewpoint or homophobia when they date someone of the opposite sex, I won’t lose my Disability identity.

Models of Illness and Disability

In my last post I wrote briefly about different models of illness and disability. These models are culturally constructed and people may not be conscious of using them:

“The previously predominant model was the Medical Model which sees illness purely as a physical problem within a patient’s body, waiting to be fixed by a doctor. In recent years the BioPsychoSocial Model has become widely accepted, particularly in psychology itself (I’ve written about this previously see here). This Model tries to hold in tension the complexity of health on different levels. For example, someone may have a condition that is somewhat genetic, triggered by something in the environment, exacerbated by stress at work and perpetuated by a lack of support from society. It is well accepted generally to say that you follow a BioPsychoSocial (BPS) Approach, which I think is worth saying because in the ME community this can seem like a swear word!

[Another model which isn’t so relevant here is the Social Model of Disability. In this view we are solely disabled by barriers in society. This could be lack of ramps, discrimination, poverty etc. It applies well to some disabilities but is a bit clumsy when applied to ME, in my opinion. It tends to be the main view of disability charities]”

I think these models are worth discussing a bit more in this post in relation to ME and disability. In my opinion none of them are a good fit for us.

Medical Model

The attitude of the Medical Model is one that a lot of pwme would initially welcome. It situates the problem as within our bodies, so is conducive to biomedical research and being prescribed actual medicine. However, it is also the Model which locked up people who had learning difficulties for life in large hospitals. If you scratch the surface, I think the dynamic of doctor-patient relationship that springs from this way of thinking is unsatisfactory for pwme too. It fosters the kind of paternalism that is likely to dismiss patient experiences, especially if doctors haven’t done the right test to find where the problem is in the body.

BioPsychoSocial Model

Theoretically, this could be a good model for the multisystemic complexity in ME. There is scope for holding in tension different levels of explanation, and therefore treating the whole person. Unfortunately this model has been misused to such an extent that it is hard to believe it can be redeemed (see my last post on illogical research funding and previous more optimistic post on BioPsychoSocial Stress).

In a report out today

“the Government relied on research which seemed to support the biopsychosocial model of disability – a model which could be taken to imply that illness or disability was at least partially the result of the attitudes held by sick or disabled people themselves. Although the language of the biopsychosocial model is clinical, there is a severe danger that, in the wrong hands, it can be used to support ugly prejudices.

The evidence used to support the biopsychosocial model is often weak, or misleadingly presented; however in 2006 the DWP funded a group of academics to begin the PACE trial which the Wolfson Institute of Preventative Medicine describes as:

“This large-scale trial is the first in the world to test and compare the effectiveness of four of the main treatments currently available for people suffering from chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).”

Results from this trial were first published in 2011 and were presented as an exciting success for biopsychosocial interventions. Since then the Government has gone on to use the biopsychosocial model, and the theories underpinning it, to suport its general approach to benefits and welfare reform. For instance, in 2012 Lord Freud defend the ‘reform’ of Disability Living Allowance in the House of Lords by saying:

“…we have gone for the biopsychosocial model. That model has now garnered very significant academic support, as those noble Lords to whom I sent that very interesting piece of research will recognise.”

Unfortunately it turns out that the research that Lord Freud refers to is often deeply flawed. In this detailed report, George Faulkner explains what went wrong and the lessons we should learn. While campaigners continue to demand that the full trial results be published, what is already clear is that the results were manipulated to give a much greater appearance of success than should have been claimed. It is also worrying that some of those involved are closely connected to private insurance companies, such as, Unum, which seems to be lobbying Government to promote private health insurance, instead of our public social security system.

Growing numbers of the international scientific community have begun to express concerns about the research central to this report, for instance, recent discussion includes:

PACE: The research that sparked a patient rebellion and challenged medicine

Results of the PACE follow-up study are uninterpretable

An open letter to The Lancet, again

George Faulkner’s powerful report usefully describes many of problems with the PACE research and explores its impact in relation to debates about welfare reform.”

See www.centreforwelfarereform.org for the full report

The BioPsychoSocial approach has been co-opted to an agenda about saving welfare money:

“I think the biggest break I got was that Waddell and Burton had put out a document three months earlier that said that work is good for you. There I was looking at a system built up over a number of years that effectively protected people from work if they’d got a problem – single mothers, disabled people – and I thought to myself, this is bizarre. Here we have developed a system on entirely the wrong premise which basically makes people ill.”
Lord Freud explaining what guided his approach to welfare reform…
It was recorded that Wessely claimed:
“As regards benefits:- it is important to avoid anything that suggests that disability is permanent, progressive or unchanging. Benefits can often make patients worse.”
…
Both major parties and much of the media have been emphasising the role of attitudinal problems in preventing those with disabilities from finding work, and concerns that disability benefits were trapping people in a culture of dependency…

Waddell explaining how the biopsychosocial model was gaining political influence:
“It is all about money. The main thing was to persuade the [then Labour] treasury that there was an opportunity for keeping costs down, particularly over the longer term.”… Their discussions explained how, within government, the antipathy caused by the view that the biopsychosocial model lacked a hard evidence base had been overcome by the softer evidence of “authoritative and expert opinion”.
Unfortunately, those selected for their authoritative and expert opinions may not have risen to positions of influence because of their moral integrity and intellectual rigour. Systematic reviews were also described as being important for changing the views of key opinion makers, yet systematic reviews may merely combine results from a number of different non-blinded trials, putting aside problems with bias and making potentially misleading results appear more reliable than they truly are.”
Read more from p28 onwards of  “IN THE EXPECTATION OF RECOVERY” | RESEARCH DISTORTED BY POLITICS

It is hard to recognise this as the theoretical model I learnt about at university in 1998-99. However, meaning isn’t fixed and I think biopsychosocial has now been perverted to this blaming of patients, cutting of costs and misleading results.

Social Model of Disability

The Social Model is a grassroots, movement of the people as the theoretical backbone to the Disabled Rights Movement. This sounds more promising. However if you take a hardline stance on this model, the disabling problem can only be located at the society level, the limitation is never within the individual. This works if you have a specific, stable condition and are otherwise well (for example for amputees or people with a sensory impairment). Once society adapts to their needs then they no longer experience barriers to participation. Obviously full adaptation has yet to happen, but it is quite conceivable with the right commitment.

However, if there are no satisfactory adjustments to make society accessible to you it becomes a problem. Post Exertional Malaise can’t fully be solved at the society level. There are things that could help: flexible hours, an accommodating benefit system, normalising working at home. These things would not be sufficient for me to go back to work and don’t help me feel well. People with ME actually do need to be fixed at the body level.

I was upset on my first day as a new employee at a disability charity in 2011: there was a high profile disability activist speaker who claimed we should abandon low rate Disability Living Allowance claimants to the cuts, as collateral in order to safeguard those with more severe disabilities. In the course of his speech he also talked about a case study of someone with severe fibromyalgia, and he was very sympathetic. I realised with frustration that as someone with a stable, physical disability he didn’t quite get that this could be the same person. If you have fluctuating conditions like fibro and ME you can be one week at a Low Rate DLA level of functioning and the next in a relapse unable to get out of bed. I actually became a classic example of this: at that time of his speech on Low Rate Care but within a few months qualifying for High Rate Mobility, Support Group ESA and bedridden. What really, really doesn’t help people like us is to be forced through financial necessity (benefit cuts) to work beyond our energy envelope and ending up in relapse…

Most other disabled people do want to include us but they don’t have our lived experience. It is important to recognise that ‘difference’ can mean variation rather than tension and conflict (as Claudia Gillberg pointed out on Twitter) but we need to be in the conversation.

Contributing to the Debate

From the Limited Capability blog I think this is a useful way to conceptualise how we fit in:

A Map of Disability

“The idea is this: all forms of disability/impairment* can be located along two axes: Well to Ill, and Visible to Invisible… Ultimately, the aim is to better distinguish what kind of adjustments people need in order to be included; and understand what kind of discrimination they may face. The Disability Rights narrative has largely been mapped from the vantage point of the Well and Visible ends of the spectrum. The forms of prejudice and discrimination encountered from this position are relatively well documented. But social oppression and disablism is equally, though differently, experienced from the opposite vantage point: the Ill and Invisible ends of the spectrum.”

I think pwme have a role to contribute to the conceptualisation of disability in this way, and that will help those with rarer conditions who are disabled but not Well-Visible. Also within the pwme community we will be at different places on this map at different times. For example, I am now visibly disabled when I go out: with my powerchair, sunglasses and wide brimmed hat nobody mistakes me for a non-disabled person! It is useful for me to get advice on wheelchairs from the wider disabled community who have been using them more. I definitely identify as Sick/ill disabled though, so I am Sick-Visible disabled. I may have more in common with someone who has MS or Parkinson’s than someone with mild ME, in terms of lived experience.

Conclusion

I wonder if this ME Awareness May we could maybe do more to reach out to other disabled people? Partly as camaraderie and partly to make sure the needs of People with ME are heard.

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Video interview with parent Mary Dimmock about her son and rituximab

Posted on 04/20/2016 by wames

Episode 78 of Llewellyn King’s ME/CFS Alert videos interviews Mary Dimmock, whose son has ME and who is receiving RITUXAN (rituximab) treatment privately. (24 mins)

 

 

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An examination of an ME online community discussion

Posted on 04/20/2016 by wames

Research abstract:

Online communities, created and sustained by people sharing and discussing texts on the internet, play an increasingly important role in social health movements.

In this essay, we explore a collective mobilization in miniature through an in-depth analysis of two satiric texts from an online community for people with myalgic encephalomyelitis (ME).

By blending a sociological analysis with a rhetorical exploration of these texts, our aim is to grasp the discursive generation of a social movement online community set up by sufferers themselves to negotiate and contest the dominating biomedical perception of their condition.

Generating a Social Movement Online Community through an Online Discourse: The Case of Myalgic Encephalomyelitis, by Olaug S. Lian, Jan Grue in Journal of Medical Humanities, published online 8 April 2016.  pp 1-17

 

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