Tag: 2018

The Human/Animal Interaction of Chronic Fatigue and Immune Dysfunction Syndrome: A Look At 127 Patients and Their 463 Animals

By R. Tom Glass, D.D.S., Ph.D. Professor Emeritus of Oral and Maxilofacial Pathology and Pathology University of Oklahoma, Health Sciences Center Tulsa, OK 74114

Throughout the recognized existence of Chronic Fatigue and Immune Dysfunction Syndrome, anecdotal reports have linked domestic animals with CFIDS, but no formal scientific studies were reported (1,2). Cats and dogs were implicated by their owners most frequently. The usual association with the presence of the animal in the household of a CFIDS patient, followed by the development of strange diseases or dysfunctions in the animal, many of which mimic CFIDS. The severity of the diseases often necessitated euthanasia. In a fewer number of cases, the onset of CFIDS in the patient was associated with an exposure to a domestic animal which was later found to show signs of CFIDS.

Observations from my animal biopsy service demonstrate two interesting findings in animals of CFIDS patients (unpublished findings). Gingival biopsies from cats demonstrated an unusual epithelial viral vesicle associated with an equally unusual submucosal inflammatory response. Several melanomas were found in dogs of CFIDS patients which had the unique feature of a striking progression of the tumor in the absence of an inflammatory response.

Both dogs and cats are known to be susceptible to a wide range of viruses. With the exception of rabies, no zoonotic (animal to human or human to animal) viral infection transmission has been demonstrated between typical domestic animals and humans (3).

These observations and recognitions prompted the following questions:

  1. Do CFIDS patients have domestic animals (pets)?
  2. What is the interaction between CFIDS patients and their pets?
  3. Do the domestic animals have any clinical signs of CFIDS?
  4. What type of signs or manifestations of CFIDS do animals of CFIDS patients demonstrate?
  5. What is the relationship between the interaction of CFIDS patients and their animals and the onset and course of CFIDS?

and resulted in a series of studies to answer the questions.

The first study was a retrospective study of Center for Disease Control and Prevention (CDC) criteria-met CFIDS patient: using a standardized questionnaire which included patient comments. The study subjects came from a university medical center and CFIDS support groups throughout the United States. Appropriate statistical tests, including mean, median, Z test, multivariant analysis, and Chi-square test, were used. This information was compared to national statistical Information on animal interaction compiled by the American Veterinary Medical Association.

One hundred twenty-seven (127) criteria-met CFIDS patients completed questionnaires on their animal Interactions- There were 114 females and 13 males in the study. All respondents were Caucasian with the exception of one Native American. The mean age of the CFIDS patients was 42.4 years with a median age of 43 years. 61.4% of the respondents were married; 311.6% were either single, divorced, or widowed.

The most striking result of this study was the association between CFIDS patients and animals (usually indoor pets) and the number of animals per CFIDS patient. 97% of the CFIDS patients had animal contact [expected normal contact: 57.9% (4)], with only 2 males and 2 females not reporting animal contact. Reported dog ownership per household for CFIDS males was 9.5 and for CFIDS females was 7.9 (expected national average: 1.52). Reported cat ownership per household for CFIDS males was 6.1 and for CFIDS females was 8.7 (expected national average: 1.95). 106 of the respondents (83.5%) reported that their animals (pets) had atypical diseases with signs and symptoms which mimicked CFIDS in humans. Of these 106 CFIDS patients 100 (94.3%) either were the primary caregiver for the sick animals or had intimate contact (sleeping with, being bitten or scratched by, or kissing the animal). The next most common animal contact was birds (parakeets and ducks were mentioned most often), followed by horses, cows, rabbits, goats, and guinea pigs. Two (2) CFIDS patients had contact with primates. The reported mean age of the dogs was 6 years (median = 6 years); of the cats was 6.2 years (median = 5 years); and of other types of animals was 3.2 years (median = 0.4 years).

All of these differences between expected and observed values were found to be statistically significant (p>001) including a statistically significant higher (.02<p£ 05) possession of cats by single, divorced, and widowed persons than married people. Statistical analysis (Chi-square) of the relationship between intimate contact by CFIDS patients and the presence of CFIDS like signs in their animals was highly significant (p£ 001). 67% of the respondents that had such contact stated that the animal showed CFIDS-like signs prior to the human and 33% of the respondents felt that the otherwise healthy animal contracted its CFIDS signs from the CFDS patient. The place where the pet was obtained was as follows: Friends (35%), Commercial (26%), Stray (21%), Pound (15%), Self-bred (3%), 41% of the CFIDS patients had animals that were still alive while 69% of the CFIDS patients had animals that had either died or were moribund at the time of the survey.

Finally, of equal importance were the CFIDS patient’s comments. These comments were often voluminous and detailed the interaction between the animals and the CFIDS patient. It is very clear that the CFIDS patients, in general, are “animal lovers” even though frquently the patient comments spoke of allergies to animals. Simliarly, the respondents gave excellent descriptions of their animal’s(s’) CFIDS-like signs from time of onset to ultimate temination.Respondents also noted that the animals were often the “living being” most consistently in close contact with the CFIDS patient.

The conclusion of this study was that CFIDS patients not only have pets, but that there is a significant animal interaction and that a large number of these animals have atypical or unusual diseases which at least mimic CFIDS.

In the second study, the CFIDS patients reported on a total of 463 animals: 115 healthy animals (which served as a control group for the study) and 348 animals which showed signs of either dysfunction or disease. The control group was comprised of 51 dogs (44%), 39 cats (34%), and 25 animals that were grouped together as “others”. The “others” group was predominantly large animals: horses, cows, goats, and pigs. All the control animals were still living and well at the time of the survey or had died of either traumatic or natural causes.

The group of animals which showed signs of either dysfunction or disease were made up of 189 dogs (54%), 144 cats (41%), and 15 animals that were grouped together as “others”. This “others” group was predominantly small domestic pets: birds, hamsters, and guinea pigs. The mean age of the dogs in this study was 6.5 years (median 6 years); of the cats was 6.2 years (median = 5 years); and of other types of animals was 3.2 years (median = 0.4 years).

The distribution of signs of the animals showing either dysfunction or disease are as follows: 137 animals (59 cats; 64 dogs; 14 others) were classified as having “General Signs.” 36 animals (15 cats; 14 dogs; 7 others) of the general signs category were classified as being “Sick NOS” because the animals were clearly Ill, but no diagnosis could be or had been rendered by a veterinarian. The “Sick NOS” animals were often described as having the same types of clinical signs as their owner. 26 animals (9 cats; 9 dogs; 7 others) in the general signs category died suddenly of unexplained causes. 26 animals (11 cats; 15 dogs) of the general signs category had a variety of altered immune conditions. including allergies, skin rashes, hair loss, systemic lupus erythematosus, and sneezing. 20 animals (3 cats; 17 dogs) developed Parvo or other viral Infections. 11 animals (9 cats; 2 dogs) transmitted their conditions to other animals either by birth or direct contact. 10 animals (9 cats; 1 dog) were listed as having eaten mice, rats, or other wild animals. 9 animals (3 cats; 6 dogs) had non-viral infections.

122 animals (41 cats; 81 dogs) had “Neurological” signs. 32 animals (17 cat.; 15 dogs) of the neurological category had lethargy, weakness, or sleep disorders. 30 animals (9 cats; 21 dogs) in the neurological category had seizures, tremors, or tail twitching. 19 animals (4 cat:; 15 dogs) demonstrated hind limb dragging, myalgia, arthralgia, or Bell’s palsy. 16 animals (6 cats; 10 dogs) were anxious, depressed, moody, or demonstrated inappropriate behavior, including urination and defecation outside their litterbox. 15 animals (4 cats; 11 dogs) had photophobia, ocular discharge, or blindness. 10 animals (1 cat; 9 dogs) had deafness, ear sensitivity, or loss of balance.

36 animals (21 cat.; 15 dogs) demonstrated “Gastrointestinal” signs. 13 animals (9 cats; 4 dogs) in the gastrointestinal category had inflamed gingiva, mouth odor, tooth loss, or drooling. 10 animal, (4 cats; 6 dogs) in the gastrointestinal category had diarrhea or abdominal distention. 9 animals (5 cat.; 4 dogs) demonstrated anorexia. 3 animals (2 cats; I dog) had increased appetite without weight gain. 1 cat had hard stools.

33 animals (18 cats; 14 dogs; 1 other) showed “Reticuloendothelial or Blood Disorders”. 12 animals (3 cats; 8 dogs; 1 other) of this category demonstrated bleeding or blood disorders. 10 animals (9 cats; I dog) in this category developed leukemia. While all of the leukemic cats were positive for feline leukemia virus [FLV], 5 of the cats had been vaccinated against FLV prior to the onset of their feline leukemia. 7 animals (5 cat.; 2 dogs) died of either feline AIDS or canine immune defidency (AIDS). 2 dogs showed massive and generalized lymphadenopathy. 1 cat and 1 dog died of lymphoma (lymphosarcoma).

Excluding leukemia and lymphoma, 15 animals (3 cats;12 dogs) developed tumors (“Neoplasia”). 8 animals (2 cats; 6 dogs) in this category had either fatal and/or multiple tumors which were not further classified, but which resulted in euthanasia of the animal. 4 dogs of this category died from malignant tumors of epithelial origin (3 squamous cell carcinomas and 1 transitional cell carcinoma), while 1 cat developed perianal adenomas, but was still living at the time of the survey. 1 dog died of a functional pituitary tumor and 1 dog died of melanoma.

Only 5 animals (2 cats; 3 dogs) were reported to have “Endocrine Disorders”. 2 cats and 2 dogs in this category had thyroid hyperplasia or thyroid nodules and 1 dog has pituitary hyperplasia.

Of equal importance, 113 of the 127 patients 89%) stated that their own CFIDS symptoms directly related their interaction with animals. Specifically, 79 of the respondents (71%) stated that they either had contact with multiple animals, were farmers, or were caretakers of multiple animals. 18 of these CFIDS patients (16%) note that the onset of their CFIDS symptoms were temporarily associated with the obtaining of a new pet, while 2 CFID patients (1%) noted that their CFIDS symptoms improved after the pet left or died. 9 respondents (8%) stated the other family members also contracted CFIDS in such manner as to implicate the pet as being possibly a common link in etiology. 3 CFIDS patients noted that the onset their CFIDS symptoms directly followed a flea bite episode and 2 CFDS patients reported that the prior owner of the home in which they contracted their CFIDS was inhabited by both CFIDS patients and sick animals.

As was noted in the first study, CFIDS patients care deeply for their animals. This observation can be understood by the detail and thoroughness with which the CFIDS patients filled out the information concerning the symptoms, laboratory results (such as blood count., blood chemistries, biopsy reports, etc.) and the courses of the animal’s(s’) condition. For the most part, it was the CF1DS patient who filled out the questionnaire. It must be remembered that these patients usually have severe fatigue and for them to have given such attention to detail was a major task.

Both studies also noted what an important role the pet plays in the CFIDS patient’s life. An analysis of the comments by the CFDS patients demonstrates unequivocally that the pet was often the CFIDS patient’s major contact with a living being. While it is imperative to consider the results of this study, it is equally imperative not to isolate CFIDS patients from their pets Rather, prevention of intimate contact, such as sharing food or kissing between the CFIDS patient and the pet, should be encouraged.

While the results of this study have certain subjective elements, such as reliance upon CFIDS patient and fault observations or the possibility of “symptom transference” (e.g., arthralgia in a pet is more likely to be noted by an arthralgic patient than a person free of joint pain), the recurrent finding of certain symptoms that may be common to both the CFIDS patient and the animal warrant attention It is important to consider the possibility that CFIDS may be transmitted from human to animal and/or from animal to human. If one considers the symptom of lethargy in the animals, the 32 CFIDS patients who observed this symptom all noted that the lack of energy was different than they had observed before in either the affected animal or in other animals in the same household who did not demonstrate the symptom. The seizure disorders and sudden unexplained deaths were more dramatic and objective signs of possible transmission of an agent that affects the nervous system. While seizure disorders and sudden unexplained deaths are not accepted features of CFIDS in humans, others have noted anecdotally a higher than usual number of seizure disorders and even sudden unexplained deaths in CFIDS patients.

While this study demonstrates the multiplicity of CFIDS-like signs in the animals, it is this same multi-organ involvement in the CFIDS patients that makes CFIDS so difficult to diagnose in humans. As with CFIDS in humans, the animals usually showed no laboratory evidence of a specific disease entity. There was, however, a predominance of neumlogic, neuromuscular, and rheumatologic symptoms in the animals just as there are in CFIDS patients. The result of these studies need to alert the veterinary profession of the need to inquire as to the health of the animal owner and their family. Conversations with a number of clinical veterinarians have pointed out that they are commonly confronted with conditions in domestic animals which do not fall into well established disease patterns. The most common of these deal with neurological and infectious diseases. These two areas were the most often reported as the pet signs found by CFIDS patients. Somewhat confounding was the low number of animals demonstrating endocrine disease. This under-reporting may be more of a lack of testing than a lack of disease as these tests are expensive and CFIDS patients are often financially unable to afford their own diagnostic tests., much less their animal’s(s’).

The results of these studies also need to alert the veterinaray profession that should there be a possibility of animal to human transmission of CFIDS, veterinarians might want to consider the wearing of protective clothing, gloves, eyewear, and masks when examining animals. We have received a number of reports from veterinarians around the country, especially from female veterinarians, that they have had to substantially limit their practices due to fatigue and other CFIDS-like symptoms. Similarly, precautions need to be taken to prevent CFIDS from being transmitted from one animal to another.

The conclusions of the second study were that animals of CFIDS patients demonstrated a wide range of disease and dysfunctional signs, similar to their CFIDS owners. The interactions between the animal and the CFIDS patients was often intimate. The study showed that the course of CFIDS in the animals varied widely, but after more thorough analyses of the data and of subsequent data, it appears that the animals have two distinct courses: 1. Their CFIDS signs produce progressive deterioration and the animal dies or 2. The animals appear to completely recover, usually after about five years.

In closing, both of the above studies had one common conclusion: animal interaction is a very important part of CFIDS patients’ lives’. I am often asked by CFIDS patients, knowing what I do about the CFIDS patient/animal interaction, if I would recommend that CFIDS patients have pets. While there is no way for me to survey animals, from my interaction with my own pet. and with the way CFIDS patients love their pets’ I would say that any pet would willingly run the risk of contracting CFIDS for the love, care and attention they will receive from CFIDS patients.

REFERENCES:

1. Ostrom, N. 50 Things You Should Know About the Chronic Fatigue Syndrome: New York: That New Magazine, 1992: pp 25, 26, 36, 37

2. Ostrom, N. What Really Killed Gilda Radner? New York: That New Magazine, Inc., 1991 pp. 159-164, 345-352

3. Cotran, RS., Kumar, V., Robbins, SL. Robbins Pathological Basis of Disease, 4th ed. Philadelphia: W. B. Saunders Co., 1989; pp. 309-310

4. Wise, JK. The Veterinary Sevice Market for Companion Animals. Schaumburg, IL; American Veterinary Association, 1992; pp. 5-65.

AUTHORS NOTE: This article is the first of three articles on my experiences with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS; aka CFS). The first article deals with the interaction between CFIDS patients and their animals. The second article will deal with the actual autopsy findings of sick animals owned by CFIDS patients, the transmission of the CFIDS infectious agent to healthy animals, and the autopsy results of these animals. The third article will deal with the oral and head and neck manifestations of CFIDS, a lip biopsy of minor salivary glands for the confirmation of CFIDS, and some interesting therapy for the head and neck pain so often experienced by CFIDS patients [The second and third articles by Dr. Glass will he published in the next two consecutive issues of MPWC News – Ed. note.] In the early 1990’s, the following studies were conducted on CFIDS patients and their animals. The articles were sent to a number of both medical joumals and veterinary medical journals. The response from the editor of the medical journals was that while the articles were well-written, thorough and timely, they were better placed in veterinary medical journals. The veterinary medical joumal editors agreed with the medical journal editors in terms of the validity of the studies; however, they felt that if they published the articles, they might jeopardize the entire practice of veterinary medicine as small animals comprise the largest segments of such practices.

Source: This article appeared in the Spring 1998 Vol 3 Number 2 Edition of the Medical Professionals With CFIDS (MPWC) News

The “Biology-First” Hypothesis: Functional disorders may begin and end with biology-A scoping review

Abstract:

While it is generally accepted that gastrointestinal infections can cause functional disturbances in the upper and lower gastrointestinal tract-known as postinfectious irritable bowel syndrome (PI-IBS) and functional dyspepsia (PI-FD)-it has still not been widely recognized that such an infection can also initiate functional non-intestinal diseases, and that non-intestinal infections can provoke both intestinal and non-intestinal functional disturbances. We conducted a scoping review of the respective literature and-on the basis of these data-hypothesize that medically unexplained functional symptoms and syndromes following an infection may have a biological (genetic, endocrine, microbiological) origin, and that psychological and social factors, which may contribute to the disease “phenotype,” are secondary to this biological cause. If this holds true, then the search for psychological and social theories and factors to explain why one patient develops a chronic functional disorder while another does not is-at least for postinfectious states-misleading and detracts from exploring and identifying the true origins of these essentially biological disorders. The biopsychosocial model may, as the term implies, always begin with biology, also for functional (somatoform) disorders.

Source: Enck P, Mazurak N. The “Biology-First” Hypothesis: Functional disorders may begin and end with biology-A scoping review. Neurogastroenterol Motil. 2018 Jun 28:e13394. doi: 10.1111/nmo.13394. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29956418

Liver volume is lower and associates with resting and dynamic blood pressure variability in chronic fatigue syndrome

Abstract:

Background: Chronic fatigue syndrome (CFS) in many cases is characterised by abnormal autonomic function and lower blood pressure (BP). In animals the liver is a capacitance vessel for BP homeostasis. We developed a novel liver magnetic resonance (MR) imaging technique to compare liver volume in CFS to controls, and to explore its role in cardiovascular physiology.

Methods: Liver MR (single breath-hold, enhanced T1-weighted, high-resolution isotropic volume excitation 3-Tesla Achieva, NL) determined liver volume. Red cell and plasma volume were also measured. A 10 min resting cardiac autonomic assessment using beat-to-beat measurement (Taskforce; CNSystems) was followed by assessment of hemodynamic response to standing to determine blood pressure drop and return to baseline.

Results: Forty-four CFS patients (age = 45.5, 34f/10 m, Fukuda criteria) and 10 age, activity and sex matched controls (age = 49.4, 7f/3 m) participated. Adjusted for body size, CFS patients had significantly reduced liver volumes (775 (101) ml/m2 v 846 (96) ml/m2; p = 0.02). At rest, liver volume was unrelated to symptom severity, heart rate, BP or heart rate variability. Both increased systolic and diastolic low frequency (LF) BP variability (predominantly sympathetic) were associated with lower liver volumes. On standing, liver volume was unrelated to BP drop but was associated with successful BP return-to-baseline. Red cell and plasma volume were associated positively with liver volume. Multivariate analysis confirmed return-to-baseline BP on standing which was independently associated with liver volume.

Conclusion: Liver volumes were smaller in CFS compared to controls. The relationship between return-to-baseline BP after standing and liver volume suggests, as in animals, that the liver is involved in maintenance of BP.

Abbreviations: ACI: Accelerated cardiac index; BPV: Blood pressure variability; BRS: Baroreflex sensitivity; CFS: chronic fatigue syndrome; Chr: Chromium; CI: cardiac index; FIS: Fatigue impact scale; HF: High frequency; HRV: Heart rate variability; LF: Low frequency; MR: magnetic resonance; NU: normalised units; SD: Standardised deviation; PSD: power spectral density; SI: Stroke index; TPRI: Total peripheral resistance index

Source: Pawel Zalewski, Andreas Finkelmeyer, James Frith, Laura Maclachlan, Andrew Blamire & Julia L. Newton (2018) Liver volume is lower and associates with resting and dynamic blood pressure variability in chronic fatigue syndrome, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2018.1488525

Effects of a short-term aquatic exercise intervention on symptoms and exercise capacity in individuals with chronic fatigue syndrome/myalgic encephalomyelitis: a pilot study

Abstract:

PURPOSE: This pilot pre-and post-intervention study investigated the effects of a short-term aquatic exercise programme on physiological outcomes, symptoms and exercise capacity in women with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

METHODS: Eleven women (54.8 ± 12.4 year) volunteered for the 5-week program; an initial 20-min aquatic exercise session then two self-paced 20-min sessions per week for 4 weeks. Pre- and post-intervention outcomes were physiological measures, 6 min Walk Test (6MWT), perceived exertion (RPE), hand grip strength, Sit-to-Stand, Sit-Reach test, Apley’s shoulder test, FACIT questionnaire, and 24-h post-test tiredness and pain scores (0-10 visual analogue scale). Heart rates, RPE, 24- and 48-h post-session tiredness/pain scores were recorded each session.

RESULTS: 6MWT distance increased by 60.8 m (p = 0.006), left hand grip strength by 6 kg (p = 0.038), Sit-Reach test by 4.0 cm (p = 0.017), right shoulder flexibility by 2.9 cm (p = 0.026), FACIT scores by 8.2 (p = 0.041); 24-h post-test tiredness and pain decreased by 1.5 and 1.6, respectively (p = 0.002). There were significant post-intervention increases in exercising heart rates (6MWT 4- and 6-min time points), oxygen saturation at 2-min, and reduced RPE at 4-min. Weekly resting and exercising heart rates increased significantly during the study but RPE decreased; immediately post- and 24-h post-session tiredness decreased significantly. There were no reports of symptom exacerbation.

CONCLUSIONS: Five weeks of low-moderate intensity aquatic exercise significantly improved exercise capacity, RPE and fatigue. This exercise mode may potentially be a manageable and safe physical activity for CFS/ME patients.

Source: Broadbent S , Coetzee S , Beavers R. Effects of a short-term aquatic exercise intervention on symptoms and exercise capacity in individuals with chronic fatigue syndrome/myalgic encephalomyelitis: a pilot study. Eur J Appl Physiol. 2018 Jun 19. doi: 10.1007/s00421-018-3913-0. [Epub ahead of print]  https://www.ncbi.nlm.nih.gov/pubmed/29923110

MPs demand more biomedical research for cruel ‘death sentence’ disease

Press Release: ME Association, June 21, 2018. Less than £1 is spent each year on people suffering from the devastating invisible illness M.E. (myalgic encephalomyelitis), a condition which leaves tens of thousands bedbound, housebound and unable to work.

Parliament heard in a landmark three-hour debate of the chronic lack of funding for medical research and how many doctors still don’t know how to diagnose or manage the condition.

End to controversial therapies and to stigma

Politicians said that controversial psychotherapy and exercise therapies recommended by the NHS after a flawed medical trial must stop NOW – because they are making patients worse.

And they called for an end to the stigma and myths surrounding M.E., which at worst, leaves sufferers to endure a tortuous existence.

Westminster Hall was told how people with M.E. are six times more likely to commit suicide.

Carol Monaghan (SNP Glasgow North West) told how ME costs the UK £3.3bn per year.

She said: “Despite the number of people affected and the devastating effect of the disease on sufferers and their families, it is very much a hidden illness, which is characterised by some as ‘yuppie flu’ and misunderstood by doctors, the public and politicians alike.”

M.E. tragedies

Westminster Hall heard of the tragic case of 21-year-old Merryn Crofts, who last month had M.E. listed as the cause of her death at inquest, and how ME Association fundraising manager, Helen Hyland, broke the news of her husband’s suicide to her children.

Yet Ms Monaghan added: “Some people consider M.E. to be a psychological condition, despite the fact that people with M.E. are not allowed to be blood or organ donors.

“Unfortunately, those who hold such beliefs often are in influential positions and have a blinkered view of the condition.

“I wonder what they have to fear from proper biomedical research into M.E. If such research showed they were correct, their views would be vindicated. However, if it threw up new information that had an impact on M.E. treatment and care, as medical professionals they should surely support that.”

The discredited PACE trial

Ms Monaghan drew particular attention to the PACE trial results in 2011, that examined graded exercise therapy (GET) and cognitive behaviour therapy (CBT).

The researchers claimed the results demonstrated both treatments were ‘moderately’ effective and led to recovery in over a fifth of patients.

But the trial has since faced intense criticism, and not only from patients in the UK. Clinicians, researchers, as well as charities, like the ME Association, have all expressed concern about how the results were obtained, analysed and presented.

Parliament has previously heard claims that the PACE trial data was deliberately flawed to “remove people from long-term benefits and reduce the welfare bill”. The PACE trial endorsement of GET and CBT helped form the basis of the NICE clinical guideline – which is now being reviewed.

PACE has had a wide-reaching influence

Ms Monaghan said one of the key authors behind the PACE trial, Professor Michael Sharpe, admitted that some involved in the trial had worked for insurance companies.

She said: “The PACE trial, which recommended CBT and GET, influences how health insurers and the DWP make their decisions.

“Insurance companies refuse to pay out unless a programme of GET has been undertaken, and many people who apply for benefits are told that they must carry out GET—or, indeed, that they appear well enough to work.

“PACE is unique in UK medical history, in that it was part-funded by the DWP.

“The links of some of its ​main authors to health insurance companies are troubling. One of those authors, Professor Michael Sharpe, states in his briefing for the debate:

“Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.”

“I will leave hon. Members to make up their own minds about that.”

Westminster Hall was told how the U.S. Center for Disease Control (CDC) and the Dutch Health Council have both abandoned GET as a treatment.

Ms Monaghan added: “If those countries acknowledge the flaws of GET, why are ME sufferers in the UK having to fight so hard for similar acknowledgement? The ME community hopes that GET will not feature in the NICE guidelines for ME treatment after they are revised.”

‘Unbecoming’ behaviour?

“Interestingly, Professor Sharpe, one of the authors of the PACE trial whom I already mentioned, emailed me this week and told me that my behaviour is “unbecoming ​of an MP”.

“I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is “unbecoming”, I stand guilty.

“If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?”

Ministerial response

Minister for Health and Social Care, Steve Brine, was asked how the Department for Health is supporting training for medical practitioners on ME care and treatment, and asked if he would support proper funding for medical research into the diagnosis and treatment of ME.

Mr Brine said the government invests £1.7bn each year into health research.

And stated that the National Institute for Health Research and the Medical Research Council would welcome “high-quality” research into “all aspects of ME… to make a scientific breakthrough”.

He described the need to find a breakthrough as a “matter of good Christian humanity” and promised to help increase the awareness of M.E. with GPs.

Read the full Ministerial response and Ms. Monaghan’s closing remarks HERE.

He reiterated that patients with M.E. symptoms should be referred to NHS specialist services – within six months for mild symptoms, three months for moderate symptoms and immediately for severe symptoms.

But Mr Brine admitted that access to services remained “a big and ongoing issue” and that the configuration of services was down to local commissioning groups.

He added that all schools must have arrangements in place to support, with flexibility, children with ME.

NICE guideline review

On the NICE guidelines, he said it was a “jolly good job” the position on M.E. is being updated but said it would be “wrong for ministers to interfere” with the process.

On benefits, Mr Brine said the “DWP recognises that ME is a real and disabling condition” and that every patient must be assessed on a individual basis.

He added: “When assessing claimants, healthcare professionals are expected to be mindful of the fact that many illnesses—including ME—produce symptoms that vary in intensity over time, and they are instructed not to base their opinion solely on the situation observed at the assessment.

“The DWP assures me that all healthcare professionals are required to read an evidence-based protocol on ME as part of their training, as well as engaging in a programme of continuing medical education that includes modules on the condition.”

‘A completely unacceptable situation’

The ME Association campaigns to make the UK a better place for people with M.E. A spokesman said: “A three-hour parliamentary debate on M.E. is not before time. We are grateful to Carol Monaghan for securing the debate, to those MPs who took part, and to ME Association members for engaging with their parliamentary representatives ahead of the debate.

“Despite being recognised by the World Health Organisation as a neurological disease – and an earlier report to the Chief Medical Officer calling for more research and a network of hospital-based clinics – many doctors still don’t know how to diagnose and manage M.E. and lack of biomedical research means that we still don’t have any effective forms of treatment.

“This is a completely unacceptable situation for a disease that is twice as common as multiple sclerosis and where a new report has estimated that M.E. is costing the UK economy billions in lost taxes, and through healthcare and benefit expenditure.”

Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter

Abstract:

Objective: Despite the growing evidence of physiological and cellular abnormalities in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), there has been a strong impetus to tackle the illness utilizing a biopsychosocial model. However, many sufferers of this disabling condition report distress and dissatisfaction following medical encounters. This review seeks to account for this discord.

Methods: A narrative review methodology is employed to synthesize the evidence for potential iatrogenesis.

Results: We identify seven potential modalities of iatrogenesis or harm reported by patients:

  1. difficulties in reaching an acceptable diagnosis;

  2. misdiagnosis, including of other medical and psychological conditions;

  3. difficulties in accessing the sick role, medical care and social support;

  4. high levels of patient dissatisfaction with the quality of medical care;

  5. negative responses to controversial therapies (cognitive behavioral therapy and graded exercise therapy);

  6. challenges to the patient narrative and experience;

  7. psychological harm (individual and collective distress).

Conclusion: The biopsychosocial framework currently applied to ME/CFS is too narrow in focus and fails to adequately incorporate the patient narrative. Misdiagnosis, conflict, and harm are observable outcomes where doctors’ and patients’ perspectives remain incongruent. Biopsychosocial practices should be scrutinized for potential harms. Clinicians should consider adopting alternative patient-centred approaches.

  • Implications for rehabilitation

  • Patients with ME/CFS may report or experience one or more of the modalities of harms and distress identified in this review.

  • It is important health and rehabilitation professionals seek to avoid and minimize harms when treating or assisting ME/CFS patients.

  • There are conflicting models of ME/CFS; we highlight two divergent models, a biopsychosocial model and a biomedical model that is preferred by patients.

  • The ‘biopsychosocial framework’ applied in clinical practice promotes treatments such as cognitive behavioral therapy and exercise therapy, however, the evidence for their success is contested and many patients reject the notion their illness is perpetuated by dysfunctional beliefs, personality traits, or behaviors.

  • Health professionals may avoid conflict and harm causation in ME/CFS by adopting more concordant ‘patient-centred’ approaches that give greater prominence to the patient narrative and experience of illness.

Source: Keith J. Geraghty & Charlotte Blease (2018) Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter, Disability and Rehabilitation, DOI: 10.1080/09638288.2018.1481149

Recent insights into 3 underrecognized conditions

The Ontario Ministry of Health and Long-Term Care recently released the interim report of a task force charged with providing recommendations on 3 symptom-based conditions that have both shared and distinctive features (Box 1): myalgic encephalomyelitis–chronic fatigue syndrome (ME-CFS), fibromyalgia (FM), and environmental sensitivities–multiple chemical sensitivity (ES-MCS).

You can read the report HERE.

Severe eosinophilic colitis caused by neuropathic agents in a patient with chronic fatigue syndrome and functional abdominal pain: case report and review of the literature

Abstract:

Eosinophilic colitis is a rare clinical condition that belongs to the group of eosinophilic gastrointestinal disorders. Its occurrence can be primary or secondary to infection, medications, or autoimmune/hematological conditions. We present a case of a young female adult with severe chronic fatigue syndrome, widespread chronic pain, including functional abdominal pain, who developed severe eosinophilic colitis following successive treatments with gabapentin and pregabalin. On both occasions, symptoms manifested as abdominal pain, diarrhea, and eosinophilia and improved upon discontinuation of the medications. Magnetic resonance imaging of the small bowel demonstrated an ascending colon colitis, and endoscopic investigations confirmed florid colitis mainly in the ascending colon with biopsies demonstrating a dense eosinophilic infiltrate with micro-abscesses. Serum eosinophil counts correlated well with the timing of the agents’ administration. There was no other organ involvement. Symptoms improved upon discontinuation of the drugs and steroid administration. Eosinophilic colitis is an exceptionally rare entity and its mechanism of action is still unclear. Suspicion of eosinophilic colitis should be raised if a patient presents with abdominal pain, diarrhea, and peripheral eosinophilia following treatment with pregabalin or gabapentin.

Source: Fragkos KC, Barragry J, Fernando CS, Novelli M, Begent J, Zárate-Lopez N.  Severe eosinophilic colitis caused by neuropathic agents in a patient with chronic fatigue syndrome and functional abdominal pain: case report and review of the literature. Z Gastroenterol. 2018 Jun;56(6):573-577. doi: 10.1055/a-0596-7981. Epub 2018 Jun 11. https://www.ncbi.nlm.nih.gov/pubmed/29890559

The biopolitics of CFS/ME

Abstract:

This paper argues that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) constitutes a biopolitical problem, a scientific object which needs to be studied, classified and regulated. Assemblages of authorities, knowledges and techniques make CFS/ME subjects and shape their everyday conduct in an attempt to increase their supposed autonomy, wellbeing and health. CFS and CFS/ME identities are however made not only through government, scientific, and medical interventions but also by the patients themselves, a biosocial community who collaborates with scientists, educates itself about the intricacies of biomedicine, and contests psychiatric truth claims. CFS/ME is an illness trapped between medicine and psychology, an illness that is open to debate and therefore difficult to manage and standardise. The paper delineates different interventions by medicine, science, the state and the patients themselves and concludes that CFS/ME remains elusive, only partially standardised, in an on-going battle between all the different actors that want to define it for their own situated interests.

Source: Karfakis N. The biopolitics of CFS/ME. Stud Hist Philos Biol Biomed Sci. 2018 Jun 8. pii: S1369-8486(17)30070-5. doi: 10.1016/j.shpsc.2018.05.009. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29887516

Circadian rhythm abnormalities and autonomic dysfunction in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) patients frequently show autonomic symptoms which may be associated with a hypothalamic dysfunction. This study aimed to explore circadian rhythm patterns in rest and activity and distal skin temperature (DST) and their association with self-reported outcome measures, in CFS/ME patients and healthy controls at two different times of year.

Ten women who met both the 1994 CDC/Fukuda definition and 2003 Canadian criteria for CFS/ME were included in the study, along with ten healthy controls matched for age, sex and body mass index. Self-reported measures were used to assess fatigue, sleep quality, anxiety and depression, autonomic function and health-related quality of life. The ActTrust actigraph was used to record activity, DST and light intensity, with data intervals of one minute over seven consecutive days. Sleep variables were obtained through actigraphic analysis and from subjective sleep diary. The circadian variables and the spectral analysis of the rhythms were calculated. Linear regression analysis was used to evaluate the relationship between the rhythmic variables and clinical features. Recordings were taken in the same subjects in winter and summer.

Results showed no differences in rhythm stability, sleep latency or number of awakenings between groups as measured with the actigraph. However, daily activity, the relative amplitude and the stability of the activity rhythm were lower in CFS/ME patients than in controls. DST was sensitive to environmental temperature and showed lower nocturnal values in CFS/ME patients than controls only in winter. A spectral analysis showed no differences in phase or amplitude of the 24h rhythm, but the power of the second harmonic (12h), revealed differences between groups (controls showed a post-lunch dip in activity and peak in DST, while CFS/ME patients did not) and correlated with clinical features. These findings suggest that circadian regulation and skin vasodilator responses may play a role in CFS/ME.

Source: Cambras T, Castro-Marrero J, Zaragoza MC, Díez-Noguera A, Alegre J. Circadian rhythm abnormalities and autonomic dysfunction in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. PLoS One. 2018 Jun 6;13(6):e0198106. doi: 10.1371/journal.pone.0198106. eCollection 2018.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5991397/  (Full article)