News from Spain

Hutan

Hutan

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Spain produces quite a lot of ME/CFS research and we have some Spanish members, so I thought it might be useful to have a regional thread for Spain.

There's new research out from the Barcelona team with Jesús Castro-Marrero, using trial participants from the ME/CFS Unit, Vall d'Hebron Hospital Research Institute. Discussed here
Effect of Melatonin Plus Zinc Supplementation on Fatigue Perception in ME/CFS: A Randomized, Double-Blind,Placebo-Controlled Trial:2021,Castro-Marrero

(Edited - my assumption about the clinic may not have been correct)
 
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CONFESQ is organizing the II Conference on the “Latest Advances in Fibromyalgia, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Multiple Chemical Sensitivity and Electromagnetic Sensitivity Research”. CONFESQ is the Spanish National Coalition of those 4 diseases. It is a non-profit umbrella association established in 2004, formed of various national entities, regional federations and associations It represents more than 50 organizations and more than 10,000 patients.

With the celebration of this conference, aimed primarily at doctors, researchers, and health professionals, they are pursuing a twofold objective:

  1. Present an overview of the current state in research of Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivity and Electromagnetic Sensitivity,
  2. Promote the creation of one or more Spanish research
For this, they have prepared an interesting programme with top national and international speakers. The congress will be taking place on October 1st (face-to-face in Madrid for professionals and with streaming for all other registered participants), and on October 14th and 21st (online for all registered participants). Those two days are particularly for our European friends and non-Spanish speakers as international researchers will present their studies.
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https://pae-eu.eu/confesq-invitatio...dvances-in-research-on-fm-cfs-me-sqm-and-ehs/
 
Study in progress but not recruiting: Influence of Co-diagnosis of Chronic Fatigue Syndrome in Patients With Fibromyalgia, University of Extremadura

"The limited literature published in concordant relation affects the chronic fatigue syndrome comorbidity in the daily life of fibromyalgia patients leads us to design this study with the main objective of evaluating differences in the quality of life associated with pain and stress, mainly in relation to levels of physical activity, sedentary lifestyle and sleep in patients diagnosed with fibromyalgia, with or without a parallel co-diagnosis of chronic fatigue syndrome."

https://clinicaltrials.gov/ct2/show/NCT05323838
 
New paper out
An Integrative Neuropsychological Approach to Chronic Pain, Emotions and Clinical Symptoms, 2022, Montoro and Galvez-Sánchez
Usual BPS stuff, assuming that measures of anxiety and depression and the like indicate fixable emotional problems that are causing illness, in this case, fibromyalgia. The suggested treatment is acceptance and commitment therapy.

115 women with fibromyalgia were recruited from the Fibromyalgia Association of Jaén (AFIXA; Spain). What on earth were the officeholders of AFIXA were thinking, offering their members up to be labelled pain catastrophisers? Hopefully the association will not partner further with these researchers.
 
Information from new forum member ONG PEM:

...
We are delighted to have joined this forum and to be part of such necessary and important initiatives for all our group of people suffering from Myalgic Encephalomyelitis.

...
The Association of People with Myalgic Encephalomyelitis, PEM (https://www.ongpem.org/), is the only association in Spain that exclusively represents people with this disease and we defend the application of the 2011 International Consensus Criteria for its clinical and differential diagnosis.

Our most immediate efforts are focused, among other objectives, on giving visibility, before society and institutions, to this neglected, stigmatized and abandoned disease, on fighting for the recognition of our rights before the public health and social-health institutions in Spain (dignified and adequate health care, achievement of work incapacities, disabilities and dependencies, etc. ), in promoting appropriate training and updating in this pathology of medical professionals and other health and social-health personnel, in achieving much more investment in research in order to achieve an unequivocal diagnosis and effective treatments and thus improve the health and quality of life of sick people, in disseminating and providing accurate information about Myalgic Encephalomyelitis, according to the scientific evidence of each moment, and in establishing national and international relations with other counterpart entities, doctors, scientists, etc., in order to achieve advances in relation to our disease and those of us who suffer from it.

...
info.ongpem@gmail.com
________
Info - ONG PEM
Facebook - Twitter - Instagram
 
April 27-30 is ECCMID 2024 in Barcelona (European Congress of Clinical Microbiology and Infectious Diseases). There's currently an annoying animated banner at the top of the page, so here's the preliminary programme in PDF.

On 30/4, Carmen Scheibenbogen is speaking for 30 mins on "Mechanisms of post-COVID syndrome and therapeutic strategies". Following is a talk by TBA on "Update on recent developments in treatment of long Covid".

Oddly, the session is co-organised with the European Medicines Agency, but also COFFI which may prove awkward, particularly if one of their acolytes is the second speaker.
 
Expect the usual useless BS, though:
In the case of persistent COVID, "multidisciplinary follow-up protocols will be established for people with prolonged symptoms, ensuring a tailored, comprehensive, and evidence-based response," according to the agreement.
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What they describe as the solution is literally the main obstacle in the way.

Plus, I'm kind of expecting that chronic illnesses like ME/CFS are explicitly excluded from it, which is all kinds of silly:
There is no official estimate of how many people suffer from long COVID. One reason is the difficulty in detecting it, as it presents with a wide variety of symptoms, such as dyspnea (difficulty breathing), brain fog (poor concentration), cognitive problems, heart problems, muscle pain, fatigue, and more. The diagnosis is made by ruling out other illnesses when one or more of these symptoms persist more than three months after a COVID infection.
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Is "cuanto más cambia, más permanece igual" an accurate translation?
 
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