Healthcare Journal dedicates an entire issue to Severe ME

Pyrrhus

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Articles in this issue:


Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
by Victoria Strassheim, Julia L. Newton and Tracy Collins - 05 Feb 2021
https://www.mdpi.com/2227-9032/9/2/168


Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
by Karl Conroy, Shaun Bhatia, Mohammed Islam and Leonard A. Jason - 20 Jan 2021
https://www.mdpi.com/2227-9032/9/2/106


Reliability and Validity of the Modified Korean Version of the Chalder Fatigue Scale (mKCFQ11)
by Yo-Chan Ahn, Jin-Seok Lee and Chang-Gue Son - 24 Oct 2020
https://www.mdpi.com/2227-9032/8/4/427


Cardiac Dimensions and Function are Not Altered among Females with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
by Per Ole Iversen, Thomas Gero von Lueder, Kristin Reimers Kardel and Katarina Lien - 16 Oct 2020
https://www.mdpi.com/2227-9032/8/4/406


Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients
by C (Linda) MC van Campen, Peter C. Rowe and Frans C Visser - 11 Oct 2020
https://www.mdpi.com/2227-9032/8/4/394
Discussion:
https://forums.phoenixrising.me/thr...ncephalomyelitis-van-campen-et-al-2020.81574/


Validation of the Severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36
by C. (Linda) M. C. van Campen, Peter C. Rowe and Frans C. Visser - 14 Aug 2020
https://www.mdpi.com/2227-9032/8/3/273


Two-Day Cardiopulmonary Exercise Testing in Females with a Severe Grade of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Comparison with Patients with Mild and Moderate Disease
by C (Linda) M. C. van Campen, Peter C. Rowe and Frans C. Visser - 30 Jun 2020
https://www.mdpi.com/2227-9032/8/3/192


Cerebral Blood Flow Is Reduced in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients During Mild Orthostatic Stress Testing: An Exploratory Study at 20 Degrees of Head-Up Tilt Testing
by C (Linda) M.C. van Campen, Peter C. Rowe and Frans C. Visser - 13 Jun 2020
https://www.mdpi.com/2227-9032/8/2/169
Discussion:
https://forums.phoenixrising.me/thr...ead-up-tilt-test-van-campen-et-al-2020.80444/
 
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gbells

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Of course they want to minimize the number of severely affected ME patients. This is to give judges determining disability claims the impression that the disease is less severe than it really is so they can fight the claims. Only 15,000 ME patients out of 2 million are approved for disability per year.
 

Pyrrhus

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Reviews in this issue:


The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
by Samir Boulazreg and Ami Rokach - 20 Oct 2020
https://www.mdpi.com/2227-9032/8/4/413


The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE)
by Derek F.H. Pheby, Diana Araja, Uldis Berkis, Elenka Brenna, John Cullinan, Jean-Dominique de Korwin, Lara Gitto, Dyfrig A Hughes, Rachael M Hunter, Dominic Trepel and Xia Wang-Steverding - 07 Apr 2020
https://www.mdpi.com/2227-9032/8/2/88


Case studies in this issue:


Life-Threatening Malnutrition in Very Severe ME/CFS
by Helen Baxter, Nigel Speight and William Weir - 14 Apr 2021
https://www.mdpi.com/2227-9032/9/4/459
Discussion:
https://forums.phoenixrising.me/thr...re-me-cfs-baxter-speight-and-weir-2021.83569/


Three Cases of Severe ME/CFS in Adults
by Leah R. Williams and Carol Isaacson-Barash - 16 Feb 2021
https://www.mdpi.com/2227-9032/9/2/215


Severe ME in Children
by Nigel Speight - 14 Jul 2020
https://www.mdpi.com/2227-9032/8/3/211
Discussion:
https://forums.phoenixrising.me/thr...n-in-healthcare-journal-20th-july-2020.80707/


Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS
by Caroline Kingdon, Dionysius Giotas, Luis Nacul and Eliana Lacerda - 04 Jul 2020
https://www.mdpi.com/2227-9032/8/3/197
 
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Of course they want to minimize the number of severely affected ME patients.
I was able to work for decades in my mild condition, but not in the deteriorated Moderate condition.

This terminology isn't very helpful.

I worked four years longer when I was too sick to do so and damaged my health, deteriorating further.

I knew disability would be impossible to obtain.

So the goods were damaged, here.
 
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They have a bias where they fight ME claims but will grant based on a neuropsychological test as a mental disorder.
I have an SEID diagnosis, without any meaningful testing to exclude all the possible other things- see Hip's endless list of tests.

Where would that get me? Pretty much nowhere. So I used Reasonable Accomodation and stockpiled sickleave I somehow had horded- to get thru my last three years.
 

gbells

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I have an SEID diagnosis, without any meaningful testing to exclude all the possible other things- see Hip's endless list of tests.

Where would that get me? Pretty much nowhere. So I used Reasonable Accomodation and stockpiled sickleave I somehow had horded- to get thru my last three years.
You need to have extensive documentation of limitations but it is winnable. I was able to do it only due to the neuropsychology exam for the mental impairment. I ended up being diagnosed with somatoform disorder but the SSA MD didn't consider that possiblity because I visited them at 5 months into the disease and it needed 6 months to diagnose. I think they scheduled it to their advantage to try to avoid dealing with that diagnosis. These people are evil.
 

Pyrrhus

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Another article in this edition:

Systematic Review of Sleep Characteristics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Maksoud et al., 2021)
https://www.mdpi.com/2227-9032/9/5/568

Excerpt:
Maksoud et al 2021 said:
Background
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multifaceted illness characterized by profound and persistent fatigue unrelieved by rest along with a range of other debilitating symptoms. Experiences of unrefreshing and disturbed sleep are frequently described by ME/CFS patients. This is the first systematic review assessing sleep characteristics in ME/CFS. The aim of this review is to determine whether there are clinical characteristics of sleep in ME/CFS patients compared to healthy controls using objective measures such as polysomnography and multiple sleep latency testing. (2)

Methods
the following databases—Pubmed, Embase, Medline (EBSCO host) and Web of Science, were systematically searched for journal articles published between January 1994 to 19 February 2021. Articles that referred to polysomnography or multiple sleep latency testing and ME/CFS patients were selected, and further refined through use of specific inclusion and exclusion criteria. Quality and bias were measured using the Joanna Briggs Institute checklist. (3)

Results
twenty observational studies were included in this review. The studies investigated objective measures of sleep quality in ME/CFS. Subjective measures including perceived sleep quality and other quality of life factors were also described. (4)

Conclusions
Many of the parameters measured including slow- wave sleep, apnea- hypopnea index, spectral activity and multiple sleep latency testing were inconsistent across the studies. The available research on sleep quality in ME/CFS was also limited by recruitment decisions, confounding factors, small sample sizes and non-replicated findings. Future well-designed studies are required to understand sleep quality in ME/CFS patients.
 

Pyrrhus

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Another article in this edition:

Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected (Fennell, Dorr, and George, 2021)
https://www.mdpi.com/2227-9032/9/5/553/htm

Excerpt:
Fennell et al 2021 said:
People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness.

This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS.

A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.
 

Pyrrhus

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Homebound versus Bedridden Status
This article is interesting- I'm in a category where I would be not quite qualifying because- I can clean a tiny area each day if I am careful and not in PEM. And I sit in a chair mostly.

We seem to universally collect really iffy data on our studies. I so wish they collected real data on our physiology.

What is the difference between bedridden and can sit in a chair? Its something related to OI, CCI, the level of neck instability (I would hypothesize). Some have severe digestive issues- that may be another "type"....

I have higher blood pressure genetically- so my OI is not as intense it seems. But it got much much worse during my mega crashes.
 

hapl808

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I am more homebound (for years) than bedridden (off and on). I cannot stand without assistance, but I can usually sit in various places for hours at a time, which is much higher quality of life than when I cannot get out of bed. I much prefer sitting in front of a computer rather than trying to find a comfortable way to use a laptop in bed.

I'm really not sure what's happening in my body to differentiate those two, but those are my two phases for the last several years.
 
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It's not impossible but it is difficult. They have a bias where they fight ME claims but will grant based on a neuropsychological test as a mental disorder. This kills any private disability insurance claim. Need a lawyer to fight.
I want to share my experience as a lucky one with disability claims. I acknowledge that there is a lot of stress and unnecessary red tape to get the financial assistance due to patients like us. I agree that extensive documentation is needed. I had to appeal with private disabilty because I had not yet completed 2 day cpet (which proved my PEM) and brain qeeg/loreta analysis (which showed xognitive defects). I did not use lawyer ironically upon advice of a lawyer who felt my case was strong. I eventually won the appeal.

With the same evidence, I was able to get immediately approved for social security disabilty. I hired a lawyer just in case but even she said I could have waited for a denial before hiring one.
 

Pyrrhus

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Pyrrhus

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New paper from Jose Montoya, Lily Chu, Mary Dimmock (@medfeb), and others:

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Montoya et al., 2021)
https://www.mdpi.com/2227-9032/9/10/1331

Excerpt:
Montoya et al 2021 said:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care.

Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited.

This article is intended to fill that gap. Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management.

We also provide suggestions to support the busy provider in caring for these patients by leveraging partnerships with the patient, their caregivers, and other providers and by using technology such as telemedicine. Combined with compassion, humility, and respect for the patient’s experience, such approaches can enable the primary care provider and other healthcare professionals to provide the care these patients require and deserve.
(spacing added for readability)