Chronic Illness Inclusion: Blog/talk on the high prevalence of energy limiting conditions and the psychological impact of not being believed

[Andy]

Quote:

"Catherine Hale spoke at It’s Our Community, a conference on social care reform. Catherine explained the high prevalence of energy limiting conditions and the psychological impact of not being believed.

I was a social care user back in the 1990s. I’ve had my chronic illness for over three decades and when it was really acute, and I couldn’t wash feed myself, or go to the loo, I had a care package. But later years when things were less severe, my needs were harder to grasp because my impairment was invisible and poorly understood. The social care system completely let me down. As a disabled lone parent I had no support.

I became a disability activist and realised my experience as a person with a misunderstood chronic illness was common. In our online communities, people with different diagnoses share the same experience of fatigue, limited energy and pain. We also share the same experiences of social injustice and oppression. A lot of that oppression is based on disbelief and denial of our impairment and our disability. In 2017 I founded the Chronic Illness Inclusion Project in order to address this and have our voice heard.

Who is the chronic illness community?

One in three disabled people have ‘impairment of stamina, breathing or fatigue’, according to the government’s own research on disability. With Chronic Illness Inclusion we developed the term ‘energy impairment’ because many of us find there’s too much negative cultural baggage around the terms ‘fatigue’ and ‘stamina’.

Many disabled people experience some element of energy impairment. When it’s the main feature and most restricting feature of a condition we call it energy limiting chronic illness (ELCI). You may be familiar with ME, fibromyalgia and lupus as some examples of ELCI."

https://inclusionproject.org.uk/blog/our-community

 

[Arnie Pye]

With Chronic Illness Inclusion we developed the term ‘energy impairment’ because many of us find there’s too much negative cultural baggage around the terms ‘fatigue’ and ‘stamina’.

If "energy impairment" becomes common as a phrase to describe symptoms it will soon have lots of negative cultural baggage attached to it. It's inevitable.

Doctors' euphemisms change every so often because they feel they need words and phrases to fob patients off with, so once a substantial number of us understand we are being fobbed off they change the names. Clearly patients are trying to do the same in this example, but I doubt very much that it will work.

 

[Ariel]

I agree with the above comment. Who is this helping? I think we can do without more euphemisms and questionable nomenclature - or strings of letters.

This way of describing and grouping together the health problems of many disabled people is misleading, and seems to make us even more of a target.

Also, from the site:

"A lot of people with ELCI are disconnected from their local communities and from networks of support because they’re housebound. With the Covid-19 pandemic and lockdown, one unexpected positive outcome is that society has become more accessible to us. Because everyone has been housebound. So they have had to find ways to meet and connect through technology as we’re doing now."

Sorry, but "everyone" has not been housebound during the pandemic. People in their homes due to lockdown have not been housebound. That is not what "housebound" means. Additionally, during lockdown people have been exercising outdoors (ie leaving the house "only" once a day), which is something many of us would love to be able to do and represents optimal health for me at least. (I am currently housebound). I am a bit worried when the person who drafted this page blithely claims that "everyone" has been "housebound" during the pandemic!

I find this upsetting. Hardly sounds like someone who understands the key concepts involved in disability or should be coining new terms.

Sorry if this is very negative! This really jumped out at me as I am bracing for myself for the inevitable "oh, I understand what it's like to be disabled and housebound" post-lockdown stuff from people who worked from home/went for walks/etc. Perhaps I have misread it, but I don't think so.

 

[Invisible Woman]

I wonder if we are approaching this from the wrong direction.

I've heard a fair amount of debate about what kids are taught in schools about tolerance & acceptance of people who are different. Kids who have two mums or two dads, or just one parent etc.

I wonder if we should also be teaching kids that not everyone is well and healthy but everyone has value nonetheless.

I don't have young kids in my life anymore but even I'm aware that the continued battle for health and fitness and getting kids involved in sports etc is still on going, suggesting to.me that it's not been terribly successful in the past.

Perhaps this is something where we could achieve multiple aims with a single strategy.

Educate young children about illness and disability (without scaring them), teach them to appreciate whatever levels of health they have and how to stay as healthy as possible.

It's always struck me how on the one hand, kids can be absolute s*ds when it comes to teasing other kids because they're different but yet, kids who are used to being around others who are different can be readily accepting.

 

[rvallee]

Link to the survey report: https://chronicillnessinclusion.org.../CII.DHSC-Womens-Health-England-June-2021.pdf.

 

[Andy]

From the report,
"The voice and experiences of patients labelled with MUS must be heard. More research is urgently needed into service users’ experience of psychological therapies for MUS.

Patients’ experiences of harm from psychological therapies for MUS must be believed. The Medicines and Healthcare products Regulatory Agency's Yellow Card scheme for reporting harm must be extended to psychological and behavioural interventions.

MUS services must be evaluated, not only for their stated aim of reducing healthcare use and costs, but for their impact on the health, wellbeing, and functional status of patients."


"We call for proper investment in biomedical research into hard-to-diagnose and poorly understood diseases that predominantly affect women to break this cycle of disbelief and neglect.

In the meantime, a change in the attitude of HCPs in the face of diagnostic uncertainty is needed. Disabled women with ELCI and chronic pain must be listened to, believed, and empowered to play an equal role in their healthcare decisions and symptom management. HCPs must be trained to be open and honest about the limits of medical scientific knowledge and approach uncertainty in a spirit of scientific inquiry.

We call for better care coordination for disabled women with ELCI and chronic pain, especially in the context of multimorbidity. We also need better integration of healthcare with social care, welfare rights support, and mental health support."


"We demand domiciliary primary healthcare services for housebound disabled people as part of our fundamental human right to healthcare.

We call for much more flexibility in service provision and accommodation to healthcare environments as a reasonable adjustment to fluctuating, energy limiting conditions, especially those with sensory sensitivity.

HCPs have a duty to proactively support our claims for social security and social care support, regardless of whether the medical technology exists to measure our impairments."

 

[Arnie Pye]

Link to the survey report: https://chronicillnessinclusion.org.../CII.DHSC-Womens-Health-England-June-2021.pdf.

The report from the Chronic Illness Inclusion group is really excellent.

 

[Andy]

Blog: Women’s health, medical ableism & patient-led research

"With a new report published by Chronic Illness Inclusion, this guest post from Jennifer Brough, one of the researchers with CII, writes about the project’s findings. Nearly 800 people responded to the CII survey, circulated earlier in the year, aimed at collecting data on the experience of women and non-binary people living with Energy Limiting Chronic Illness in England. This was made in response to the call out from the Department of Health’s review into women’s health and wellbeing. There are links to the full report included in Jennifer’s text.

Chronic Illness Inclusion’s Women’s Health Survey Points to Medical Ableism

Hundreds of responses indicate how the ‘Medically Unexplained Symptoms’ diagnosis compounds the view that chronic pain and energy limiting chronic illnesses are psychosomatic.


Chronic Illness Inclusion’s (CII) latest report on women and non-binary people with energy limiting chronic illness (ELCI) has highlighted the difficulties experienced in getting diagnoses, treatment, and support for poorly diagnosed and underdiagnosed conditions.

We launched the survey to collect data on ELCI as part of a submission to the Department of Health and Social Care’s Inquiry into Women’s Health and Wellbeing in England, launched on International Women’s Day earlier this year.

Among the hundreds of testimonies the survey received, there were several common threads: disbelief, inaccessibility of treatments/services, and lack of knowledge on specific conditions from healthcare professionals (HCPs). The results painted a shocking picture of stigma, neglect, and woefully inadequate health and social care provision for disabled women with ELCI and chronic pain, with those who are housebound not even having their rights to basic healthcare upheld."

https://zebrapsych.wordpress.com/2021/07/22/womens-health-medical-ableism-patient-led-research/

 

[Andy]

 

[Ariel]

From the report,
"Patients’ experiences of harm from psychological therapies for MUS must be believed. The Medicines and Healthcare products Regulatory Agency's Yellow Card scheme for reporting harm must be extended to psychological and behavioural interventions."

Great idea; any chance of this happening? Would be a breakthrough.

 

[rvallee]

Great idea; any chance of this happening? Would be a breakthrough.

During a recent meeting, the American Medical Association voted to "call for the HHS' Office for Civil Rights to revise the definition of harm to include mental and emotional harm."

Will probable take a while but could be a turning point, at least in the US. Of course there is so much interpretation to it that it allows for severe ME to not be considered harm or even an adverse reaction since it is considered psychological and there's no telling how much interpretation there could be to "psychological harm", which in our case is actually both. Well, all 3 really since to many it certainly causes emotional anguish, the insult on top of all other harms.

 

[Andy]

Great idea; any chance of this happening? Would be a breakthrough.

It's a subject that is cropping up more and more often, that I see, on social media from various sources, so hopefully we will eventually see a push for it to happen in the UK.

 

[Arnie Pye]

From the report mentioned above : https://chronicillnessinclusion.org.../CII.DHSC-Womens-Health-England-June-2021.pdf

it says that women can't get adequate pain relief and are routinely disbelieved. It just occurred to me that their lives are going to get substantially worse in the near future if they have no diagnosis or are disbelieved and assumed to have "MUS", thanks to the new NICE guidelines on treating chronic pain which say that people with "primary" pain shouldn't be treated with pain relief they should be given CBT and graded exercise therapy.

I still wonder if I'm going to have my pain relief taken off me too, although I do have some proof (from my medical records) that the source of my pain ought to be classified as "secondary" rather than "primary". But I wouldn't put it past my surgery to try and remove my pain relief and I'll have to fight to keep it.

 

[Ariel]

It's a subject that is cropping up more and more often, that I see, on social media from various sources, so hopefully we will eventually see a push for it to happen in the UK.

I remember someone making this point in one of the letters responding to some of this pro-GET and CBT stuff we've been seeing lately in response to Long Covid - but I have not been able to locate a link. I thought the letter made the point well and was hopeful that this point could be emphasised more in media response of organizations to GET & CBT lobby re: there is no mechanism for reporting harm from these kinds of interventions, unlike with medications, leading to a skewed picture of and lack of data about safety and efficacy.

I hope this would lead to a more general understanding that the subject area is actually not very scientifically solid. The Yellow Card Scheme point is easier to digest for most people than anything about scientific methodology.

The campaign against such changes if there is a movement to introduce such a mechanism for reporting harms should be interesting to witness!

 

[Andy]

"Reading through the free-form responses to our Women’s Heath Survey has been a heartbreaking task. The stories from women throughout England were both shocking, but unsurprising in equal measure. Shocking because of the difficulties in getting a diagnosis, (and these were about pre-pandemic experiences) either because of a GP refusing to take symptoms seriously or because of a lack of suitable specialist clinics. Unsurprising, because these are stories I hear daily from my friends and colleagues in CII. Why do women with chronic pain in Suffolk not have accesses to the same services as women in London? Why can you get a diagnosis as an adult for EDS if you live in one county, but not if you live in the next-door county?

We received 1,871 responses that covered 6 different aspects of the difficulties that women with chronic illnesses face. The overall theme was that of medical ableism, a failure to understand our conditions or listen to our experiences.
These quotes are the voices of those women, they deserve to be heard."

https://chronicillnessinclusion.org.uk/2021/08/18/__trashed/

 

[Invisible Woman]

Why do women with chronic pain in Suffolk not have accesses to the same services as women in London? Why can you get a diagnosis as an adult for EDS if you live in one county, but not if you live in the next-door county?

A slight aside perhaps but we've been hearing a lot about "individualised treatment" recently. Usually in defence of continuing such therapies as CBT & GET.

I think one if the problems with "individualised" therapy of this kind is that the therapist will be more likely to stick their label of choice on the patient.

So we'll have some patients with the same condition having two different labels and possibly treatment paths as each other while at the same time patient with different conditions having the same label slapped on them and the same treatment paths as each other.

A mess in other words that will prevent accurate public health records and assessment of treatment efficacy and safety. Exactly the kind of muddle the BPS lot of caused for us.